Summary of Human Subjects

Protection Issues Related to 

Large Sample Surveys

U.S. Department of Justice

Bureau of Justice Statistics

Joan E. Sieber

June 2001, NCJ 187692
U.S. Department of Justice

Office of Justice Programs

John Ashcroft

Attorney General

Bureau of Justice Statistics

Lawrence A. Greenfeld

Acting Director

Report of work performed under a BJS purchase order to Joan E. Sieber,

Department of Psychology, California State University at Hayward, Hayward,

California 94542, (510) 538-5424, e-mail jsieber@csuhayward.edu. 

The author acknowledges the assistance of Caroline Wolf Harlow, BJS

Statistician and project monitor. Ellen Goldberg edited the document.

Contents of this report do not necessarily reflect the views or policies of the

Bureau of Justice Statistics or the Department of Justice.

This report and others from the Bureau of Justice Statistics are available

through the Internet — http://www.ojp.usdoj.gov/bjs
Table of Contents

1. Introduction 2

Limitations of the Common Rule with respect to survey research 2

2. Risks and benefits of participation in sample surveys 5

Standard risk issues, researcher responses, and IRB requirements 5

Long-term consequences 6

Background issues 6

3. Procedures to protect privacy and maintain confidentiality 9

Standard issues and problems 9

Confidentiality assurances and their consequences 21

Emerging issues of privacy and confidentiality 22

4. Other procedures for minimizing risks and promoting benefits 23

Identifying and minimizing risks 23

Identifying and maximizing possible benefits 26

5. Procedures for responding to requests for help or assistance 28

Standard procedures 28

Background considerations 28

A specific recommendation: An experiment within the survey 32

6. Procedures for responding to mandates to report 34

Child maltreatment 34

Elder abuse 37

Intent to harm oneself or others 38

7. Vulnerable populations: Risks and special protections 40

IRB concerns 40

Children and teenagers 40

Pregnant women 42

Cognitively impaired persons 42

Elderly persons 43

Minorities 44

Students, employees, and institutionalized persons 44

Economically or educationally disadvantaged persons 45

8. Efforts to minimize refusals to participate in sensitive surveys 46

Efforts to induce participation 46

Efforts to evoke answers to sensitive questions 48

9. Survey procedures for informed consent with special procedures for obtaining

consent for respondents under age 18 53

Regulatory requirements 53

Informed consent as practiced in survey research 54
10. Effects of signed consent on response rates and other aspects of conducting a

survey or other study 58

Regulatory issues 58

Background considerations 59

11. Researching ethical questions 61

The experiment within a study 62

The focus group 63

Ethnography 65

Meta-communication in the research process 66

12. Keeping abreast of new developments and answering questions 67

On-line resources 67

Meetings 67

Journals 68

Informal local groups 68

Office of Human Research Protections 68

13. Briefly annotated bibliography of literature cited 69

Appendix A. State phone numbers for reporting child maltreatment 80

Appendix B. Using focus groups 81
Protection of Human Subjects in Large Surveys 1

This report identifies best practices to ensure that large sample surveys such as the National

Crime Victimization Survey (NCVS) are ethically sound and compliant with the Common

Rule. There are three approaches used in this report to identify best practices:

• Identify regulations and statutes governing each question, and the position of the

Office of Human Research Protections (OHRP) and of major Institutional Review

Boards (IRBs) and investigators who oversee large sample survey research. 

• Recognize that these are general guidelines. Federal regulations recognize that

broad areas of investigator and IRB discretion are required to validly investigate

sensitive topics. The IRB’s mandatory reasoned discussion and decision-making

must be based on a broad understanding of the issues, and the IRB must document

its decision process in its minutes.

• Provide resources that would enable the Bureau of Justice Statistics (BJS) to

increase its sophistication and to evolve as issues change with new regulatory

requirements and interpretations and with changes in the country’s social or political

environment. 

This report addresses the following nine issues:

• The risks and benefits of participating in sample surveys on sensitive topics.

• Procedures to protect respondent privacy and ensure the confidentiality of data. 

• Procedures to minimize risks and promote benefits to respondents.

• Procedures to respond to requests for help or assistance.

• Procedures to respond to revelations of a situation that interviewers must, by

statute, report to appropriate authorities.

• Dangers and safeguards for vulnerable populations, including children and

teenagers, pregnant women, mentally disabled persons, and persons confined to an

institution, particularly correctional facilities.

• Efforts to minimize refusals to participate in surveys concerned with sensitive topics.

• Survey procedures for informed consent; special procedures for obtaining consent

for respondents under age 18.

• Effects of signed consent forms on response rates and other aspects of conducting

a survey or other study.
1

These agencies and their relevant regulations are: Housing and Urban Development (24 CFR 60), Justice (28 CFR

46 with additional protections in 28 CFR 512 and 28 CFR Part 22), Transportation (49 CFR 11), Veterans Affairs (38

CFR 16 with additional protections in 38 CFR 17.85, M-3, Part 1, Chapters 9 and 15), Consumer Product Safety (16

CFR 1028), Environmental Protection (40 CFR 26), International Development (11 CFR 225), NASA (14 CFR 1230),

NSF (46 CFR 690), Agriculture (7 CFR 16), Commerce (15 CFR 27), Defense (32 CFR 219, plus 12 additional

regulatory protections), Education (with extensive additional protections to privacy and confidentiality as noted

below), Energy (10 CFR 745), Health and Human Services (45 CFR 46 Subpart A), Social Security (P.I. 103-296),

and CIA (Executive Order 12333); the last three agencies also employ Subparts B, C, and D of 45 CFR 46.

Protection of Human Subjects in Large Surveys 2

1. Introduction 

The NCVS, sponsored by the Bureau of Justice Statistics (BJS), is conducted and analyzed

by the U.S. Census Bureau which then provides summary statistics and data files to BJS. 

This survey asks sensitive questions of the same set of respondents every 6 months over 3

years (seven times); respondents include all members of a given household who are at least

age 12. Over 40,000 households or living groups are surveyed. This research is exempt

from IRB review and from the Common Rule (45 CFR 46, subpart A). However because the

NCVS involves complex ethical issues, BJS has requested this review of issues pertinent to

the ethics and regulatory requirements of large-scale sample surveys that ask sensitive

questions and study vulnerable populations. 

The federal policy for the protection of human subjects, which formerly pertained only to

Health and Human Services research (45 CFR 46, Subpart A), has now been incorporated

into the regulatory structure of 17 federal agencies, eight of which have additional human

subject protections.1

 Subpart A, which is now known as the Common Rule, as well as the

rest of 45 CFR 46 (Subparts B, C, and D), may be found at http://ohrp.osophs.dhhs.gov/

under Policy Guidance. Briefly, the Common Rule sets forth the role and operation of the

IRB, the required elements of the research protocol and the informed consent, and general

criteria for IRB review and approval. The Department of Justice regulation is found at 28

CFR Part 46.

Limitations of the Common Rule with respect to survey research

The Common Rule poorly defines privacy and confidentiality in survey research. It promotes

the prevalent misconception that self-report research is necessarily less risky than

experimental or observational research. For example, it exempts anonymous surveys of

adults from IRB review (45 CFR 46.101(b)(2)), on the premise that adults can freely protect

their privacy by refusing to answer. In fact, self-report questions can induce respondents to

reveal far more personal and sensitive aspects of their lives than can be studied ethically by

observational or experimental methods (see section 2). Subjects should at least give

informed consent based on an accurate understanding of the kinds of questions that will be

asked.
Protection of Human Subjects in Large Surveys 3

The Common Rule specifically requires that informed consent include a statement about

how the researcher will maintain confidentiality. However it leaves to the IRB and the

researcher the subtle matter of understanding what confidentiality is and how it relates to

privacy. The Common Rule defines privacy obliquely by reference to private information, as

follows:

Private information includes information about behavior that occurs in a context in which an

individual can reasonably expect that no observation or recording is taking place, and

information which has been provided for specific purposes by an individual and which the

individual can reasonably expect will not be made public (for example, a medical record). 

(45 CFR 46.102(f)(2))

This oblique reference to privacy confuses it with confidentiality (an understanding or

agreement about the disclosure or nondisclosure of identifiable information to others) and

fails to convey the notions of personal privacy (discussed in section 3) that are important to

ethical research. It also implies that everyone has the same concerns about others’ access

to themselves and to identifiable data about themselves, and that researchers and IRBs can

accurately assess what others situated differently from themselves would consider as

private.

Based on this confusing set of definitions, the Common Rule states that:

(7) When appropriate, there are adequate provisions to protect the privacy of subjects and to

maintain the confidentiality of data. (45 CFR 46.111(a)(7))

Unfortunately, this requirement assumes a level of sophisticated knowledge concerning

privacy and confidentiality that most IRBs and researchers do not possess. 

Given these limitations of the Common Rule, the conscientious survey researcher might look

beyond the Common Rule to Subparts B, C, or D of 45 CFR 46 for guidance. Subpart B

pertains to biomedical research on fetuses, pregnant women, and human in vitro fertilization,

and Subpart C pertains to persons under correctional supervision. Neither of these sections

are relevant to the NCVS. However Subpart D pertains to minors and is sensitive to

children’s personal privacy interests. It requires the child’s active assent (when assent

would be meaningful) and parental permission, with either party having veto power. It

recognizes that there are contexts in which parental permission is not a reasonable

requirement to protect the subjects (such as neglected or abused children), and also

recognizes a range of circumstances in which parental permission may be waived. The

parental permission requirement respects the parents’ right to control the conditions of their

child’s life and their ability to judge the degree of acceptable risk for their child to take. 

Subpart D requires IRB approval when the research involves minors and anonymous
Protection of Human Subjects in Large Surveys 4

surveys, interviews, and observation of public behavior in which the investigator participates

in the activities being observed. It limits a child's exposure to risk, even if there is parental

permission and the child’s assent.
Protection of Human Subjects in Large Surveys 5

2. Risks and benefits of participation in sample surveys

Risks to privacy and confidentiality have long been deemed the main risks in sample survey

research. However the scope and magnitude of this risk has increased as more sensitive

topics are studied, and as researchers begin to oversample vulnerable and marginalized

populations. As Bersoff and Bersoff (2000) point out, surveys raise issues of privacy that

are rarely found in other research. There is the potential for self-report research to glean

clinically sensitive data and put it in the hands of non-clinicians. Even if the survey is

anonymous, researchers should not ignore the potential for violation of confidentiality and for

severe emotional upset to respondents.

Standard risk issues, researcher responses, and IRB requirements

To prepare a research project for review by an IRB, researchers must provide appropriate

discussion of risks and benefits in the protocol and in the informed consent documentation. 

The IRB is required to evaluate the adequacy of researchers’ recognition of potential risk

and benefit, their plans for reducing or preventing risk and enhancing benefit, and the

appropriateness with which this information is presented in the informed consent. 

The risks that can arise in survey research are the same basic risks that can arise in other

research:

• Mere inconvenience when a survey is administered at an inconvenient time or place

or simply takes too long to administer.

• Emotional or psychological risk when a survey causes upset, or worry, warranted or

not, about breach of confidentiality.

• Social risk due to stigma or other negative social outcomes of breach of

confidentiality.

• Physical risk if revelations about others get back to those persons, particularly when

researchers study domestic violence, gang activity, or other phenomena concerning

violence-prone individuals.

• Financial risk if revelations result in loss of employment or insurance coverage.

• Legal risk when illegal activities are disclosed.

Most researchers do not catalog every conceivable risk in their consent document or in their

protocol, nor do IRBs expect them to do so. However IRBs are mindful of the risks that

researchers may overlook, including those described above. Most of the risks have to do

with breach of confidentiality or fear or worry about a possible breach. The IRB is likely to

want to know specifically how confidentiality is handled, whether limits to confidentiality are
Protection of Human Subjects in Large Surveys 6

adequately disclosed, and whether promises of confidentiality can actually be guaranteed. 

IRBs are attuned to issues of “secondary subjects,” who are identifiable persons about

whom the respondent is asked sensitive questions. These “secondary subjects” are

considered subjects of survey research because they are identified and researchers obtain

information about them. If feasible, investigators should obtain their informed consent as

they too may be placed at risk. If it is deemed impractical or impossible to obtain their

informed consent, the waiver of informed consent should meet the requirements specified in

the Common Rule, and the IRB must document its discussion and decision in its minutes. 

Long-term consequences

A sensitive matter is usually a troubling one. It may be a matter the respondent fears to

discuss lest others learn about their particular situation. Fears of social or economic

reprisals can cause respondents to lie, refuse to answer, or answer honestly but worry for a

long time afterward. IRBs should recognize the importance of accurately identifying the

kinds of unwarranted fears respondents are likely to have, as well as the actual risks. They

require investigators to take steps to reduce both kinds of fears, and to ensure that

researchers can keep promises of confidentiality. 

Some matters are so sensitive that the respondent may relive it when discussing it. For

example events such as physical assault are so traumatic that the respondent would

reexperience old pain by retelling the details yet again. IRBs customarily require that

researchers who inquire about sensitive issues such as rape have referral information and

even availability of several free therapy sessions for respondents who recount traumatic

events and would welcome such assistance in restoring their emotional well being.

The benefits to respondents of participation in surveys (not to be confused with financial

incentives, which are discussed in section 8) are usually limited to the benefits of an

interesting exploration of some topic, an informative and satisfying exchange in the

debriefing process, and some written information pertinent to the topics discussed. (See

section 4 for other appropriate and feasible additional benefits.) 

Depending on the particular survey, the IRB will question whether vulnerable populations,

non-English speakers, children, and persons whose autonomy is somehow constrained are

accorded due protection and respect. These issues are discussed in section 7.

Background issues

As most skilled interviewers have learned, getting in the door to interview an individual is not

as hard as getting out. A well-constructed survey and a skilled interviewer can create
Protection of Human Subjects in Large Surveys 7

powerful motivation to discuss personal matters. This is a source of both benefit and risk,

especially with repeated-measure surveys (such as the NCVS) in which a relationship is built

up over time. Properly constructed surveys begin with easy, non-threatening questions. 

Each new topic is initiated with a general, non-threatening question and followed by

increasingly specific and sometimes more sensitive questions. This funneling from general

to specific makes for easy recall of related information, good comprehension of related

questions, and rapid responding. It also makes respondents comfortable with questions

they otherwise would refuse to answer. Lonely or troubled respondents are especially likely

to welcome the attention of a respectful and skilled interviewer who promises confidentiality. 

Respondents may find the interview session interesting, and perhaps even a therapeutic

opportunity to recall and reflect upon their experiences or to get some things “off their chest.” 

The ethical and well-prepared interviewer is a good listener and keeps private information

confidential. In response to a request for help or to signs of problems, or simply as a routine

part of debriefing, the interviewer may provide useful feedback, referrals, or reference

materials.

It would seem apparent that the respondent can readily refuse to answer any question that is

too personal. Answering a question seems tantamount to informed consent, hence it is

often assumed that there is little risk involved. This assumption of respondent autonomy

and ease of refusing to answer questions is somewhat illusory given what is known about

the “foot in the door” technique (Freedman and Fraser, 1966). Once persons agree to a

small and benign request, they can be gotten to agree to a larger and less benign request

which they would ordinarily never agree to, or to which persons who did not receive the first

benign request would not agree. Interviewers can lead respondents who would ordinarily

refuse to answer highly personal or embarrassing questions about some aspect of their

personal life to answer such questions by first asking them to answer a rather tame question

on the same topic. The underlying principle is that people want to appear consistent and

cooperative and hence will continue to answer questions even when they would otherwise

judge it ill-advised to do so (Cialdini, 1993; Orne, 1962). 

The power of the well-constructed survey to yield answers to sensitive questions is a good

thing in the hands of an ethical, sensitive, well-trained interviewer, but it can be dangerous

otherwise. There are several possibly serious risks. Details of some of these risks and

associated risk prevention strategies are discussed in subsequent sections. Respondents

may: 

• reveal reportable criminal activities, 

• reveal information damaging to their social or financial standing, employability, or

reputation which the researcher fails to treat as confidential,

• reveal information that is treated with appropriate confidentiality but which

nevertheless causes the respondent to worry about the confidentiality of the
Protection of Human Subjects in Large Surveys 8

disclosure or to feel embarrassed,

• reach out for help such as by revealing suicidal ideation to an insensitive interviewer

whose inappropriate response confirms the respondent’s sense of hopelessness,

• reach out for help but then feel betrayed or embarrassed that the interviewer took

stronger action than was expected,

• recall and ruminate about unresolved issues that the interviewer fails to recognize or

respond to appropriately,

• reveal information in a family, community, or organizational setting where their

privacy or the privacy of others in that group is not accorded due respect, or reveal

potentially damaging information about another identified person (the secondary

subject), 

• respond to emotionally charged topics that may cause them to focus long afterward

on painful memories such as brutal crime victimization, or 

• experiment with socially unacceptable behavior in response to an interviewer who

uses the “everybody does it” approach to evoking answers about unacceptable

behavior. 

The appropriate safeguard is not to weaken the power of the survey to gather information,

but to strengthen the protections offered. The IRB frequently identifies the possible risks,

and helps the researcher become sensitive to possible signs of risk and to plan appropriate

safeguards. 

In addition to safeguards to confidentiality, investigators should consider how to conclude

the interview. The respondent should have an opportunity to express reactions or ask

questions. The conclusion should be a two-way conversation and should not be carried out

in a perfunctory manner. It should adequately settle any questions or concerns the

respondent may have, and return the respondent to a positive, satisfied state of mind.

Many interviewers are unprepared for risks even after they are sensitized to their possible

occurrence. Researchers should develop referral and feedback information that might be

generally useful to all respondents. They should also locate institutional or outside

resources that can respond appropriately to respondents who reach out for help or indicate

distress. There should be competent professionals who are available to researchers for

consultation when issues arise which the researcher (interviewer) feels unprepared to

handle. However the investigators must always respect the wishes of the respondent and

keep promised conditions of confidentiality. Giving more help than is wanted is often

harmful, not helpful. Moreover the interviewer should not attempt to help beyond providing

referrals or other written resource information. These topics are discussed further in

sections 3 through 7.
Protection of Human Subjects in Large Surveys 9

3. Procedures to protect privacy and maintain confidentiality

The Common Rule and most guidelines for IRBs emphasize the importance of privacy and

confidentiality but are neither specific nor detailed in their recommendations. There is a

superb literature on approaches to respecting privacy and confidentiality with which survey

researchers should be familiar.

Standard issues and problems

The Common Rule leaves much to the judgment of IRBs with respect to privacy and

confidentiality, so that the same degree of caution need not be imposed on all research. 45

CFR 46.111 (a)(1) states that “Risks to subjects are minimized: (i) By using procedures

which are consistent with sound research design, and which do not unnecessarily expose

subject to risk,” and 45 CRF 46.111(a)(7) states that “When appropriate, there are adequate

provisions to protect the privacy of subjects and to maintain the confidentiality of data.” 

How do IRBs identify the relevant issues? Invasion of personal privacy is a subjective

matter, and IRB members judge invasion of privacy on their own sense of propriety and on

the particular circumstances of the study. This can be an inadequate basis for judgment.

Confidentiality is an objective but complex matter and involves many possible judgments

depending on the research. Confidentiality pertains to data on identifiable persons. In

recent times, IRBs have become increasingly concerned about what constitutes an

identifiable respondent of survey research. When is a survey truly anonymous? Even when

the names of respondents are never attached to their data, there is increasing concern

about deductive identification of otherwise anonymous respondents on the basis of such

elements of their data as birth date, occupation, zip code, race, and gender. The issue of an

“identifiable subject” also arises if the researcher wants access to existing records to identify

persons suitable for the proposed study; if the data being sought are sensitive, the IRB may

judge that consent of subjects should be obtained for accessing those existing data. If

existing school data are sought on youngsters, the Buckley Amendment (the General

Education Provisions Act (20 USC 1232)) requires parental permission for release of

identifiable information about children in public schools. 

IRBs do not consider sample survey research anonymous (and hence exempt from IRB

review) if identifiers that accompany the data are later stripped from the data. If a unique

identifier was attached to it at some point in the process — for purposes of respondent

selection and interviewing or for recontacting selected subjects by a supervisor checking on

the work of the interviewer — it is not an anonymous survey. A survey that involves any

identifiable data at any point in the research process is subject to IRB review.
Protection of Human Subjects in Large Surveys 10

If researchers are collecting sensitive survey data about identified individuals, the IRB will

inquire whether there are provisions for protecting the confidentiality of the data. Such

provisions typically include substituting codes for identifiers and storing the code key

elsewhere, removing face sheets (typically containing such information as names, phone

numbers, or addresses), destruction of identifying information such as computer sheets,

keeping data in locked files, impressing on research assistants the importance of

confidentiality, and limiting access to the data by various means. Data from large sample

surveys are normally stored electronically for easy access and analysis. Whenever

identifiers accompany these data or when deductive identification would be easy, there is

major concern about the security of the computer system on which the data are stored, and

researchers must satisfy these concerns.

A particularly difficult issue has to do with the training and supervision of interviewers and

research assistants. Where possible, the research staff should not be persons who might

know some of the respondents, though this is difficult to ensure. Researchers who are

concerned about the cultural and linguistic matching of interviewers with subject populations

should consider hiring and training local people. However, there is the risk that the

interviewer will know the respondent. 

The Common Rule defines and discusses privacy and confidentiality in ways more

appropriate to biomedical research than to survey research. It fails to recognize both the

aspects of personal privacy that the effective interviewer must respect and the individual

subjectivity and diversity of people’s sense of privacy. With respect to confidentiality, it gives

no hint of the vast technical literature on methods of ensuring confidentiality in survey

research.

Privacy

The difficulty of defining invasion of one’s own privacy is evocatively expressed by Melton

(1992, p. 66):

'I know it when I feel it.’ A gut sense of personal violation may be the tie that binds such

disparate events as being subjected to a body search, being the subject of gossip, having

one’s mail read, being asked one’s income, or having one’s house entered without

permission. It should come as no surprise that such an intensely personal construct is

difficult to define.

It is difficult to define, understand, and respect the privacy of other persons situated

differently from ourselves. Without a useful definition or theory of privacy to guide them,

researchers and IRBs must depend on their own culture-bound notions of privacy. They
Protection of Human Subjects in Large Surveys 11

invoke their personal and idiosyncratic definitions, resulting in a capricious standard of

protection. 

The meaning of privacy in survey research inheres in the culture and personal

circumstances of the particular subject, the context and nature of the research, and the

social and political environment in which the research occurs. A useful definition of privacy

that recognizes these manifold elements is borrowed from, and based on, the elegant theory

of personal privacy developed by Laufer and Wolfe (1977):

Privacy refers to persons and to their interest in controlling the access of others to

themselves.

This theory of personal privacy recognizes the manifold cultural, developmental, and

situational elements by which individuals orchestrate their privacy. It recognizes that people

have an interest in (a) controlling the time, place, and nature of the information they give to

others, and (b) controlling the information or experiences that are proffered to them. Thus

informed consent serves as a control mechanism, provided the prospective subjects of

survey research are adequately informed of what it is they will be asked and what they may

experience. 

Laufer and Wolfe’s theory would be highly useful to efforts to educate IRBs; to design ethical

elements of recruitment, consent, location, circumstances, and content of surveys; and to

train interviewers. Laufer and Wolfe’s theory embodies four dimensions of privacy:

The self-ego dimension refers to the development of autonomy and personal dignity. Young

children have an aversion to being alone. By middle childhood, children seek time alone to

establish a sense of self and to nurture new ideas, creating a basis for self-esteem, personal

strength, and dignity. By age 6 or 7, children have a need and right to privacy not found in

infants and younger children. Teenagers are intensely private, as they seek to forge an

identity separate from that of their parents. Teenagers would be embarrassed to be

interviewed about personal matters in the presence of their parents or others, and in the

presence of their parents would most likely refuse to be interviewed or lie in their answers. 

Adults continue to need time alone and develop many means of protecting that privacy. 

The environmental dimension includes socio-physical, cultural, and life-cycle dimensions. 

Socio-physical elements are physical or technological elements that offer privacy; more

affluent individuals tend to have more of such barriers to unwanted intrusion. Cultural

elements include norms for achieving privacy; for example some cultures permit lying while

others permit persons to have private rooms and telephones. Life-cycle elements vary with

age, occupation, available technology, and changing socio-cultural patterns. The ways one
Protection of Human Subjects in Large Surveys 12

establishes privacy at one age, under one set of circumstances, may be unsatisfactory or

unavailable at a later stage.

The interpersonal dimension refers to how interaction and information are managed. One’s

social setting and its physical characteristics provide options for managing social interaction;

physical and social boundaries can be used to control people’s access to one another.

The control/choice dimension grows out of the other dimensions. Young children have no

control over their privacy except through hiding. They learn to use personal, cultural, and

physical resources to control their privacy. Events that would threaten one’s privacy early in

the development of control/choice are later so easy to control that they are no longer

considered a threat to privacy.

Understanding and respecting the privacy of others

How do the researcher and IRB learn about the privacy interests of persons situated

differently from themselves? Networks of local researchers, educators and outreach

workers such as social workers, farm agents, and public health nurses can share valuable

information about the most appropriate ways to approach members of various cultures. 

Interviewers who are of the same culture and backgrounds are vital to some sensitive

research in some kinds of communities. Focus groups and other forms of community

consultation are useful ways to learn about a culture, how the individuals within that

community perceive the research, and how the research that would be objectionable to them

can be made acceptable. The community meetings held by Fisher and Wallace (2000) are

a good example of learning the views and suspicions of members of inner-city African

Americans about studies of adolescent risk behavior. The community consultation

discussed in Melton et al. (1988) is a dramatic example of the explosive acquaintance

process of AIDS activists with AZT researchers. While only the Fisher and Wallace account

focuses on survey research, there is much that survey researchers could learn from both

accounts about the importance of understanding the perspective of one’s subjects in fieldbased applied research.

Community consultation can also ameliorate fears among potential respondents who feel a

need to avoid strangers. For example, a large-scale survey of the housing needs of the

elderly required that interviewers go to the homes of elderly people, who are fearful of scam

artists, robbers, and burglars. The interview teams began by making well-advertised visits

to senior centers in the neighborhoods where they would be conducting their survey. They

explained their project, answered questions, and made certain that the local newspaper

carried the story of their presentation and project, along with photographs of them. Their

first contact with their prospective respondents was by letter, and it included a copy of the

newspaper article with the pictures of the interviewers. The interviewers then phoned to
2

Portions of this section are drawn from an unpublished paper that was commissioned by the National Bioethics

Advisory Commission: J. E. Sieber, Privacy and Confidentiality: As Related to Human Research in Social and

Behavioral Science, 2000.

Protection of Human Subjects in Large Surveys 13

make an appointment for their visit. When they appeared at the door, they carried with them

a copy of the newspaper article so that the respondents could see that they were indeed the

designated interviewers. 

Confidentiality

The following definition of confidentiality is adapted from that developed by Boruch and Cecil

(1979):

Confidentiality is an extension of the concept of privacy; it refers to (a) identifiable data

(some information about a person that would permit others to identify the specific person,

such as a non-anonymous survey, notes or a videotape of the person) and (b) agreements

about how those data are to be handled in keeping with respondents’ interest in controlling

the access of others to information about themselves.

The two critical elements of this definition — identifiable data and agreement about the

handling of the data — indicate the critical role of informed consent, which states how the

researcher will control access to the data and secures the respondent’s agreement to

participate under these conditions. This definition further underlines the importance of

planning before gathering sensitive data. It is important that researchers make early plans

regarding techniques to ensure confidentiality. They should incorporate these plans into the

methodology and into any consent agreements with respondents or contractual agreements

with subsequent users of the data, including funders who may wish to audit the data. 

Investigators should include all of these details in the IRB protocol.

This definition of confidentiality leads naturally to the literature on procedural,

methodological, statistical, and legal approaches to ensuring the confidentiality of survey

research data. 

Methods and procedures of ensuring confidentiality2

Approaches to ensuring confidentiality of survey research fall into seven categories:

• Procedures that eliminate linkage of data to unique identifiers 

• Intersystem linkage

• Statistical strategies
Protection of Human Subjects in Large Surveys 14

• Agreements: Data sharing, secondary analysis, or audit of data

• Legal protections

• Descriptive statistics and raw data releases

• Internet research

Procedures that eliminate linkage of data to unique identifiers. Anonymity offers the

best insurance that disclosure of subjects’ responses will not occur. Researchers have

developed dozens of techniques that are responsive both to the need for anonymity and to

other research needs. Different kinds of data — cross-sectional, longitudinal, and data from

multiple sources — bring with them different research requirements and different ways of

meeting those without using unique identifiers of subjects. The following brief summary is

illustrative, not comprehensive. See Boruch and Cecil (1979) for a comprehensive review.

Cross-sectional surveys, in their simplest form, require just one data collection session. 

Anonymity in which even the researcher is at all times ignorant to the identity of subjects

protects the respondent from legal prosecution, social embarrassment, and concern that the

data may fall into the wrong hands. However it may be desirable to have some form of

follow-up to test for sampling validity, response validity, or to do further research on some or

all subjects. These refinements are impossible with complete anonymity, but can be

achieved through temporarily identified responses with subsequent destruction of identifiers,

or through use of brokers to provide anonymous data to the researcher after completing one

or more of these refinements.

Longitudinal surveys track individual subjects over time. There are many ways in which

aliases or arbitrary identifiers can be used as a basis for linking observations over time while

preserving the confidentiality of individual responses. For example, subjects may choose an

easily remembered alias and use it on repeated occasions. Some approaches are quite

complex. For example, research by the American Council on Education (Austin and Boruch,

1970) on political activism among American college students used the following three-file

linkage system:

1. Initial data collection:

• File A contains each subjects’ data and arbitrary account number (X). 

• File B pairs each subject’s name with a second arbitrary account number (Y). File C

matches the two sets of account numbers, X and Y.

• File C is shipped to a researcher in a foreign country.
Protection of Human Subjects in Large Surveys 15

2. Second data collection:

• Second set of identifiable longitudinal data are gathered.

• Names are replaced by their Y account number; this file is shipped to the foreign

researcher.

3. Data analysis:

• Foreign researcher substitutes X account numbers with corresponding Y numbers. 

• Each set of data files is returned to the data analysts.

• Data are organized in longitudinal sequences; the identity of each subject is

unknown.

• The longitudinal data are analyzed.

• Foreign researcher destroys File C; the three files can never be merged to learn

subject identities.

Thus the data were safe. Conceivably, foreign discovery procedures could be used to

obtain some of the identifiable data before File C is destroyed. Therefore a Certificate of

Confidentiality (see below) could be obtained to preclude that unlikely event.

Intersystem linkage. Intersystem linkage is sometimes necessary to link research records

on subjects with other, independently stored records on the same individuals. In the case of

highly sensitive data such as psychiatric or police records, a linkage strategy may be needed

so that the researcher does not have access to any identified records. 

One such method is as follows:

1. Researcher wishes to link data on 50 subjects with information from their police records.

2. Subject provides data and an alias (no name) to the researcher.

3. Subject provides to the archive (police) his name and alias.

4. Archive provides the requested police information with the aliases (not the names)

attached

5. Researcher analyzes relationship between his research data and the police record data.

This brief summary is merely illustrative of some of the many specific procedures for

preserving anonymity or confidentiality. The actual literature on this topic is immense. (See

Boruch and Cecil (1979), and Campbell, Boruch, Schwartz, and Steinberg (1977). See also

current U.S. Census Bureau papers on this topic.)
Protection of Human Subjects in Large Surveys 16

Statistical strategies. Researchers have developed various statistical strategies to

eliminate any direct link between the respondent’s identity and his true answer. All of these

methods involve the injection of a specified amount of random error into the dataset so that

researchers cannot ascertain an individual’s true identity but can still perform a useful

statistical analysis of the data. 

The statistically elegant randomized response method is used in direct interview to protect

privacy and to ensure confidentiality. The following is an oversimplified example: Suppose

the researcher wished to ask whether respondents had struck their child in anger this week

or cheated on their income tax this year — obvious invasions of respondents’ privacy. Each

respondent is instructed to roll a die in his cupped hands and observe which number came

up without showing it to the researcher. If the predetermined number was rolled, the

respondent is to respond “yes,” irrespective of the true answer. By an algebraic removal of

the expected number of false “yes” answers from the data, the researcher can determine the

true proportion of “yes” responses. Neither the researcher nor anyone else besides the

respondent knows who gave a true “yes” response. 

The randomized response method has been in use since 1965, and researchers have

developed many statistical variations of it. Although it has been tested in many settings, the

jury is still out on its usefulness. It tends to produce somewhat more admissions of

undesirable behavior than traditional face-to-face interviewing, but brings with it many

disadvantages. It is difficult for subjects to understand and believe, and time-consuming to

explain. The interviewer has an important role in establishing trust and understanding, and

respondents of limited ability have difficulty understanding and trusting the procedure

(Landsheer, van der Heijden, and van Gils, 1999). It injects random error necessitating

larger samples. Without understanding the reasons why people might refuse to give candid

answers, the routine use of a difficult method such as this seems inappropriate. For critical

evaluations of the randomized response method, see Linden and Weiss (1994), Umesh and

Peterson (1991), and van der Heijden, van Gils, Bouts, and Hox (2000). 

Methodologists have designed statistical strategies for use with longitudinal and multiple

source data; see Boruch and Cecil (1979).

Agreements: Data sharing, secondary analysis, and audit of data. Concern for the

integrity of data and for extending the analyses of important datasets brings with it the need

to do so without risk to privacy or confidentiality. The simplest solution is to render the data

anonymous. However anonymity may render the data useless to the secondary user or

auditor. To satisfy the needs of secondary users while also protecting the interests of

respondents, the researcher can employ procedures that diminish (a) outright breach of

confidentiality, (b) likelihood of deductive identification, (c) the sensitivity of the information to

which the secondary users have access, or (d) the need for the secondary user to actually

take possession of the data (see Boruch and Cecil, 1979). Researchers and IRBs need to
Protection of Human Subjects in Large Surveys 17

develop contractual agreements with funders who require audits and secondary analysts

with whom they share data about how they will ensure confidentiality. They should also

include information in the informed consent so that potential subjects understand what

researchers will do with the data subsequent to the initial project.

Legal protections of confidentiality. Statutory protection of research data enables

researchers to protect the confidentiality of research records on identifiable individuals from

subpoena. Subpoena of social research data is rare. However if vulnerable data could not

be protected from subpoena, there would be a chilling effect, especially on criminological

and delinquency research. There is growing use of Certificates of Confidentiality. However

researchers and IRBs are often unclear about the protections these provide and their

limitations.

Certificates of Confidentiality. The Public Health Service Act (PHSA) was amended (1970)

to authorize researchers to withhold information concerning the identity of participants in

research on use and effect of drugs. The Secretary of the Department of Health and Human

Services grants this authority by issuing Certificates of Confidentiality. A 1988 amendment

broadened its scope to include mental health, biomedical, clinical, behavioral, and social

research. Under this amendment, the Secretary of DHHS may

authorize persons engaged in biomedical, behavioral, clinical, or other research (including

research on mental health, including research on the use and effect of alcohol and other

psychoactive drugs), to protect the privacy of individuals who are the subject of such

research by withholding from all persons not connected with the conduct of such research

the names or other identifying characteristics of such individuals. Persons so authorized to

protect the privacy of such individuals may not be compelled in any federal, state, or local

civil, criminal, administrative, legislative, or other proceedings to identify such individuals. 

(42 U.S.C. 242a(b)(1989))

Various institutes within DHHS are authorized to issue certificates. Since 1993 DHHS can

grant certificates for research that is not federally funded. DHHS regards a certificate’s

protection to supercede State law; this position has been challenged and upheld in the New

York Court of Appeals (People v. Newman, 32 N.Y.2d 379, 298 N.E.2d 651, 345 N.Y.S.2d

502, 1973) (Boikess, 2000).

A certificate does not protect identifiable data of “secondary subjects,” a point which

researchers may fail to clarify in the informed consent. The certificate only protects

researchers against compelled disclosure of subjects’ names or other identifiers, coupled

with their data. It does not protect subjects who voluntarily consent to disclose their

research records, nor preclude a researcher from reporting the identity of subjects who

disclose intentions to harm themselves or others. Moreover the language of PHSA is

imprecise, which gives rise to uncertainty. It offers protection to “names and other
3

I am indebted to Dr. Joe Cecil and Jason Gilbert, Federal Judicial Center, for providing me with their detailed

summary and analysis of these issues.

Protection of Human Subjects in Large Surveys 18

identifying characteristics,” but the data of a known subject may not necessarily be

protected. Melton (1992, p. 81) provides an example of this possible loophole:

[I]n one of my own studies, all of the children in a particular county who are involved in

criminal child abuse prosecutions are invited to participate. Knowing that fact, a defense

attorney might seek the data of a particular child (not the names of participants) as a fishing

expedition for information intended to impeach the child’s testimony. A literal interpretation

of the statute would suggest that the subpoena might be enforceable if the data could be

shown in some way to be relevant to the proceeding. Although it is also possible — perhaps

even probable — that a court would interpret the statute more broadly in keeping with

Congressional intent, the uncertainty prevents unequivocal offers of confidentiality to

participants and, therefore, should be eliminated by a technical amendment.

It is also unclear whether child abuse reporting laws are abrogated by a Certificate of

Confidentiality. Is such reporting a “legal proceeding” that cannot be mandated under a

certificate? 

Researchers must request the certificate before each research undertaking. Subpoenas

typically occur for reasons unrelated to the study itself and therefore are not reasonably

foreseeable by either the subjects or the investigator. Hence the protections offered by a

certificate may be unavailable when needed. Researchers sometimes send data to a

foreign country, although this does not always guarantee protection.

Placing data in a foreign country and laws governing foreign discovery.

3

 Many survey

researchers believe that sending confidential data to a foreign country — such as to a

colleague in Canada — protects the data from subpoena. However this is only a deterrent

from subpoena, not a guarantee of protection. Federal Rules of Civil Procedure govern the

procedures for discovery, including foreign discovery. Rule 26(b) states that parties may

obtain discovery of anything that is relevant, not privileged, and admissible or “reasonably

calculated to lead to the discovery of admissible evidence.” Rule 34 states:

(a) Scope. Any party may serve on any other party a request (1) to produce and permit

the party making the request, (2) to inspect and copy, any designated documents, or (3) to

inspect and copy, test or sample any tangible things which constitute or contain matters

within the scope of rule 26(b) and which are in the possession, custody, or control of the

party upon whom the request is served....
Protection of Human Subjects in Large Surveys 19

(c) Persons Not Parties. A person not a party to the action may be compelled to

produce documents and things or to submit to an inspection.

The courts cannot compel a party to produce data if the party does not have “possession,

custody, or control” of the documents, but it is unclear what constitutes “control.” If a

researcher sends data out of the country for the express purpose of preventing subpoena,

does this qualify as loss of control in the eyes of a court? Jason Gilbert (2000), a legal intern

at the Federal Judicial Center, offers the following analysis of this question: 

While the courts seem to have settled on defining control as when a party has a legal right to

obtain something, questions remain for the researcher seeking to give up control of research

data to a foreign colleague in an attempt to protect it from being disclosed. Legal rights to

possession can come from a variety of sources, particularly when one is considering

intellectual property such as research data. If a researcher were to create a set of data,

when exactly would he or she no longer have a legal right to that set of data? What if the

researcher gave one part of the data to a colleague? What if the researcher only gave up a

small “key” to the data that allowed the individuals who participated in the study to be

identified? What if the researcher gave part, or even all, of the data to a colleague but still

continued to collaborate with that colleague to perform analysis on the data even though it

was not in the researcher’s possession? Would that researcher still have a legal right to get

back what he or she had surrendered? While the concept of giving away the legal right of

possession is relatively straightforward, the mechanics of how exactly a researcher can give

away the legal right to possess his own data (particularly if one does not allow for a sale or

some type of contract) remains unclear.

Gilbert also reminds us of some other implications of “loss of control” of data. (1) Transfer of

all data out of the country would mean loss of all electronic or hard copies in the

researcher’s possession. (2) A researcher must never transfer data after receiving a

subpoena. Even if it is done as a safeguard beforehand, the researcher may still be found

to have acted not in good faith and be cited for contempt of court. (3) If the research is done

under a contract requiring that the researcher maintain control of the data, relinquishing

control to a foreign colleague would constitute a breach of that contract. (4) The

researcher’s professional code of ethics or a future journal editor may require that the

researcher maintain control of the data.

A researcher who loses control of data by sending it to a foreign colleague places that

colleague at risk of receiving a subpoena for the data and of having to seek legal means of

protecting confidentiality. However the rules and procedures of foreign discovery are

complex, expensive, and time-consuming. If the colleague who controls the subpoenaed

information is a foreign national residing outside of the United States, the party seeking the

data must follow appropriate procedures for foreign production. The United States has

ratified various treaties concerning obtaining of evidence from foreign countries, and each

country has its own procedures. Discovery in a foreign country involves sending a formal
Protection of Human Subjects in Large Surveys 20

“letter of request” by the court where the action is pending to a court in the foreign country. 

This letter requests the foreign court to request documents of the person in possession of

the desired information. There are various diplomatic and legal approaches to delivering

such a request and accomplishing the discovery. These may make discovery of the

information too unattractive to pursue.

Descriptive statistics and raw data releases. Statisticians in governmental agencies in

the United States, Great Britain, and Sweden have developed practices of adjusting tabular

presentations so that deductive identification is not possible. Deductive identification could

occur if one knew some facts about an individual, perhaps in conjunction with their zip code. 

By searching the files for that zip code and locating the individual whose data matched those

known facts one could deduce additional information from the other data associated with

that individual. For example, if an 84-year-old Hispanic woman from the 01373 zip code

area was known to have had quite a few husbands and to have become quite wealthy, it

would confirm quite a few suspicions to learn that there was an 84-year-old Hispanic woman

at that zip code whose annual interest income was in seven figures and who had had 20

husbands. 

The most common way to prevent deductive disclosure is to broaden categories so that data

from unique individuals or from groups of data containing some unique individuals such as

top income earners or persons involved in high-profile criminal victimization are not

apparent. Another is error inoculation so that no individual case could be assumed to be

correct (as in the random-response method).

When the U.S. Census Bureau’s Disclosure Review Board reviews NCVS datasets in

anticipation of their release to the InterUniversity Consortium for Political and Social

Research (ICPSR), the Review Board's primary role is to scrutinize data for extreme cases

that might uniquely identify the individuals involved or even subject them to criminal

investigation. Thus, instead of showing that a given 84-year-old Hispanic woman had been

widowed 20 times and had an interest income of over $1,000,000, it might show that the

person had been widowed more than four times and had an annual interest income of over

$100,000.

Internet research. There is rapidly emerging literature on various kinds of Internet

research, associated methods of solving problems of privacy and confidentiality, and

uncertainties or vulnerabilities connected with these “solutions.” Researchers’ insouciant

claims that Internet data are anonymous or that confidentiality will be protected are

reminiscent of such promises regarding non-web research of several decades ago. 

This area of research will grow rapidly since it enables researchers to reach far-flung

subjects quickly, inexpensively, round-the-clock, and without a research staff. The problems

and solutions to issues of privacy and confidentiality will change rapidly as new technologies
Protection of Human Subjects in Large Surveys 21

render old problems and old solutions obsolete. Some of the rapidly evolving issues

include: 

• How to ensure that researchers do not study children under rules that pertain to

adults.

• How to ensure anonymity of responses given that web page software logs as header

lines the IP address of the machine from which the respondent accessed the

researcher’s web page.

• How to store an on-line data file so that unauthorized persons cannot access it.

The advice offered by OHRP and generally heeded by IRBs is that the safest practice is to

use the Internet for purposes of recruitment and screening. After locating a qualified

respondent, a researcher can e-mail the survey and a respondent return it as an attachment. 

Given the uncertainties, especially with regard to assurances of confidentiality, it is

reasonable at this stage to recommend that assurances of confidentiality contain appropriate

disclaimers. 

Confidentiality assurances and their consequences

The link between promises of confidentiality and willingness to participate in surveys is

tenuous. Researchers’ promises of confidentiality are not always effective in producing trust

in research participants. Such promises cannot always be kept due to faulty data

management practices and other possible compulsory disclosures. Moreover, the

relationship between faith in confidentiality promises and participation in survey research is

not what most suppose it to be.

Singer, Mathiowetz, and Couper (1993) investigated the relationship between concerns

about confidentiality and mail returns to the 1990 census. Such concerns have only a very

slight effect on survey participation, and this relationship holds even when demographic

variables known to be related to concerns and survey participation are controlled. Similarly

assurances of confidentiality have unexpected effects. Singer, VonThurn, and Miller (1995)

conducted meta-analysis of 30 research reports on the relationship between various forms

of confidentiality assurances (anonymity, use of the randomized response method, and

verbal assurances). They found that the effect of confidentiality assurances on willingness

to respond is small, positive, statistically significant, and robust in the presence of various

control variables, but only when sensitive questions are asked. The effect is small and

negative when the questions asked are not sensitive ones. Elaborate assurances of

confidentiality defeat their purpose when the contents of the survey are not sensitive. 

Apparently such assurances of confidentiality heighten respondents’ perceptions of the
Protection of Human Subjects in Large Surveys 22

sensitivity or threat of the survey or arouse their suspicions (Singer, Hippler, and Schwarz

(1992)).

Emerging issues of privacy and confidentiality

Electronic data collection and storage practices are changing rapidly. Interviewers and their

subjects need not meet face-to-face and may even reside in different parts of the world. 

Emerging issues of confidentiality are more varied and dangerous than current policy

makers can easily anticipate. Soon issues of confidentiality will be transformed in ways we

cannot imagine today. There are already digital communication networks on a global scale,

and hackers with a laptop computer and Internet technology could download any electronic

data stored on any server anywhere in the world. There are also emerging technologies for

protecting communication and personal identity, and there is a whole new cohort of

technology-sophisticated privacy activists. Governments are developing and testing new

laws that protect data, and globalization of culture and policy processes is occurring. The

American Association for the Advancement of Science, the National Science Foundation,

and various Internet research groups are now actively exploring these issues. Scientific

societies concerned with the protection of social and behavioral research data — the

American Statistical Association, American Psychological Association, and American

Sociological Association — will continue discussing these issues at their annual meetings for

years to come.
Protection of Human Subjects in Large Surveys 23

4. Other procedures for minimizing risks and promoting benefits

One cannot begin to minimize risks or promote benefits unless the risks and benefits are

first identified. Although conducting a risk and benefit assessment is a fundamental concept

in the planning of ethically responsible research, some of the possible risks and benefits are

not immediately obvious. Possible risks and benefits are virtually unlimited. 

Identifying and minimizing risks

In section 3, six kinds of risk were identified: inconvenience, physical risk, psychological or

emotional risk, social risk, economic risk, and legal risk. They are but one dimension of the

risk matrix that is presented here (figure 1). A second dimension is the location within the

research process where the risk might occur. A third dimension is the specific vulnerability

of the individual subject; for example, public figures are vulnerable, but in a different way

than those engaged in illegal activities or those who are institutionalized. 

The six kinds of risk could be elaborated or conceptualized in various ways. In section 3, we

viewed them simply as subsets of risk related to invasion of privacy or breach of

confidentiality. They are also issues of personal safety or well being. Some of these risks

can come about through misunderstanding, outright deception or concealment in the way

the survey is administered, and inequitable treatment by the researchers. Researchers can

address these risks in the communication process of informed consent (with informed

consent being regarded as an ongoing communication process, not simply a consent form). 

Issues of ownership of the data and the knowledge are also relevant. If shared, are the data

shared responsibly? Is the new knowledge used in a way that benefits the respondents or

harms them? What is the relationship of the project to the gatekeepers who facilitated the

recruitment process, and to the opinion leaders who will create attitudes toward the project

and the respondents? 
Protection of Human Subjects in Large Surveys 24

Figure 1. Risk matrix, by part of the research process at which risk occurs and by type of

respondent

Kind of risk

Part of research process and

type of respondent

Inconvenience 

Physical

Psychological 

Social Economic

 

Legal

The theory or idea

 Public figure

 Lack autonomy

 Lack resources

 Stigmatized

 Criminal

 Secondary subject

 Disabled

The research process itself

 Public figure

 Lack autonomy

 Lack resources

 Stigmatized

 Criminal

 Secondary subject

 Disabled

The setting in which the 

research occurs

 Public figure

 Lack autonomy

 Lack resources

 Stigmatized

 Criminal

 Secondary subject

 Disabled

The use or dissemination of 

the findings

 Public figure

 Lack autonomy

 Lack resources

 Stigmatized

 Criminal

 Secondary subject

 Disabled
Protection of Human Subjects in Large Surveys 25

Researchers may conceptualize the scientific or research activity as having four parts, each

of which has risks (as well as benefits):

1. The idea, theory, or hypotheses that drives the design of the survey, sampling of

populations of interest, and analysis and interpretation of the results. A new idea

can affect individuals and change cultural values in fundamental ways. The idea

may not be correct but it might be falsely confirmed by faulty analysis and

interpretation. The idea may be correct, but be disseminated in a way that does

harm. The researcher has four ways to reduce the risk of false confirmation or

dissemination of damaging ideas: recognize that the null hypothesis could be true;

design the research so that each possible theoretical orientation is tested fairly;

remember the limitations of the models and measures employed and warn that

application and generalization to other populations must be done with caution; and

share the documented data with other scientists who want to verify the findings or

test alternative hypotheses.

2. The research itself has several stages, each of which could involve risks: the

recruitment, the induction, the consent and survey, the debriefing, data analysis, and

data sharing. 

3. The institutional, community, or group setting of the research. Research is rarely

only a matter between researcher and respondent; there are usually third parties

involved. Every setting has its members, structure, culture, and interests. Most

settings have gatekeepers who impose rules on the research transaction. All of

these elements may impose pressures and risks on both the respondents and the

researcher. Because individuals vary in their degree of personal autonomy and

institutions in their degree of control and coercive power, the kinds of harm that may

result from research in those settings also range greatly.

4. Uses of the research findings. In their enthusiasm to use what is learned,

investigators can overlook that many findings are based on measures of dubious

reliability or account for so little of the variance that they should not be considered

practically useful. Researchers can misuse findings that are useful for one purpose

but harmful for other purposes. 

Respondent vulnerabilities are covered in section 7. The following are some examples of

the range of vulnerabilities researchers should consider when engaging in risk assessment. 

Respondents who are public figures are especially exposed to attention and criticism; for

them privacy is a sought-after luxury. Those lacking in autonomy or resources to protect

their privacy lack the usual means of preventing intrusions from others; these may include

children and the mentally and emotionally disabled. Scapegoats and targets of prejudice,

such as homosexuals, persons with HIV infection, and some racial minorities, are especially

sensitive to researchers’ interpretation of their lives and their data. Institutionalized persons

lack the normal degree of autonomy and may also be stigmatized. Persons engaged in

illegal activities have many fears concerning disclosure of information about themselves. 
Protection of Human Subjects in Large Surveys 26

Persons damaged by the respondents’ revelations, the “secondary subjects,” are harmed

often without any knowledge of the harmful disclosure.

The risk matrix serves to sensitize researchers and IRBs to the kinds of risks they may

anticipate (figure 1). Once risks are identified the quest for safeguards or protections can

begin. Researchers can minimize some of the risks identified by this matrix by use of

approaches that respect privacy and ensure confidentiality. Researchers can minimize other

risks through mindfulness of the possible harms that may result from the research findings. 

Identifying and maximizing possible benefits

Survey research is typically considered to benefit respondents by giving them an opportunity

to discuss a topic relevant to their life, and by providing valuable information to organizations

and to society in general. However there are other benefits to the respondents and their

community that are typically overlooked (figure 2).

Figure 2. Benefit matrix for survey respondents and their community

Benefit Respondents Community

Relationships Gain rapport with respectful

researcher

Create ties to the project

Knowledge Conduct informative debriefing,

having one’s questions answered.

Understand victimization issues

relevant to community improvement

Material resources Provide informational handouts Provide brochures, books,

videotapes, and other

communication media

Training Develop relationship between

some of the respondents and the

community-based project

Teach crime deterrence

Earn esteem Earn praise for program

Empowerment Earn prestige from an effective

program

Cultural anthropologists have pioneered in thinking about ways to benefit the respondent’s

community partly for practical reasons. Without making the research a win-win situation for

themselves, respondents, and the host community, researchers would quickly lose support

from the hosts. Anthropologists such as Pertti Pelto (described in Sieber, 1991) have hired

selected community members as research assistants, then shared their data with the host

community so that it can be used for public policy purposes. Thus they have left behind a

cadre of new researchers who can remain in contact with the investigator or can continue to

build on and analyze the dataset on behalf of their community. 
Protection of Human Subjects in Large Surveys 27

With this model in mind, researchers should consider the potential value in employing and

training members of some target communities to assist with some aspect of the NCVS

interviews or dissemination of information. Conceivably, once researchers interview a

cohort seven times and the project is ready to move on, researchers could distribute

information on crime prevention to the particular respondents and to the community, and to

assist the community (via the police department or other agencies) in helping its citizens

make optimal use of that information.

Researchers should use both the risk and benefit matrices early in the research planning

process to generate ideas. They can then translate the resultant assessment of possible

risks and benefits into actual operations. 
Protection of Human Subjects in Large Surveys 28

5. Procedures for responding to requests for help or assistance

Effective interviewers are skilled at establishing trust and rapport. These qualities tend to

instill in respondents a sense that the researcher is a responsive and capable professional. 

When the interview topic is a sensitive one that evokes concerns in a troubled respondent, it

is not unusual for that person to reach out to the interviewer for help. The interviewer is

often only that — a paid interviewer, not a helping professional. However because of the

sensitivity of such situations — this may be the first time the individual has dared to reach

out for help — it is important that the interviewer not rebuff or ignore the request, and

respond in an appropriate and helpful manner without getting personally involved.

Standard procedures

When researchers work with vulnerable populations or in situations where they may be

asked to provide help or assistance, it is standard for IRBs to require that the researchers

prepare a set of referrals. The required response varies with the type of research. In some

cases researchers give respondents an information sheet (that may include referrals) to

thank them for participating and as part of the debriefing. In other cases, researchers

develop various referral sheets, depending on the kind of help that is requested. In research

with vulnerable participants who are at high risk, the researchers establish a relationship

with specific professionals and arrange for the referred respondents to have several

sessions with the professional. In the case of high-risk respondents, IRBs may require

appropriate training to help interviewers recognize and interpret responses indicative of

need for help.

Research institutions that engage in research with high-risk populations usually require their

interviewers to handle requests for help as follows: If the request comes at the beginning or

during the interview, the interviewer is to ask if the interview can continue and promise to

give help or assistance when the interview is concluded. At the end of the interview, the

interviewer gives the respondent the appropriate referral information. If the respondent

simply cannot wait for the end of the interview, the interviewer provides assistance, thanks

the respondent for the information provided so far, and discards the interview responses. 

Researchers may write the costs of the professional’s services into grant support for the

project or into the research institute’s budget.

Background considerations

It is important to understand the degree of response that might be appropriate in a given

project. When should interviewers actively intervene in the lives of persons who need help

and when should they simply provide referral information? It is useful to consider a range of

kinds of high-risk respondents. 
Protection of Human Subjects in Large Surveys 29

Survey researchers who study social psychological aspects of HIV infection and injection

drug use have faced the ultimate challenges of responding appropriately to requests for

help. Hence investigators now apply, when appropriate, a range of practices that were

developed in survey research on HIV infection and drug treatment to other high-risk settings. 

Interviewers in the HIV and drug treatment fields receive HIV post-test counseling to

acquaint them with the feelings, concerns, and behaviors of persons who have recently

learned that they have HIV, who fear that they may have HIV, or who have significant others

who have HIV. Contacts for counseling and treatment are set up prior to the interviews so

that the referral process can work seamlessly. This includes a police contact. 

In survey research in the HIV and drug treatment fields there is now a routine that is followed

quite strictly. If an interviewer encounters someone who is distressed, or someone the

interviewer is worried about, the interviewer has a telephone number and perhaps a cell

phone he can use to call for help right away or give to the respondent to use right away. 

When survey research is conducted on the streets, projects require that a team member

accompany the interviewer to the interview, even if there is only one interview scheduled. 

The team approach is used for the safety of both the respondent and the interviewer. If the

interview is held in the project’s field office, another team member is always present when a

respondent is in the office. For very immediate emergencies the interviewer helps the

recruiter or receptionist until assistance arrives. Again, everyone has prearranged telephone

numbers.

Ultimately, such field survey projects must rely upon the skill, humanity, and insight of their

staff to sense incipient problems and to deal with them. This is one reason why researchers

seek staff members who have related prior experience, including knowledge of this culture

in their own lives and prior work with emergency situations. As one project director

commented: “We seek staff among people who live on the edge. There is no substitute for

experience.”

Some of the same precautions are often used with survey research on prostitutes, drug

dealers, and other members of street cultures. However most survey research is not

conducted “on the edge.” Interviewer training and preparedness remain important but the

emergencies they may face are often more subtle, less immediate, and less frequent.

A “cry for help” may be implicit or explicit. Examples of implicit responses include

statements indicating desperation, suicidal ideation, or a high score on a depression scale. 

Explicit responses might be a statement of extreme duress such as “My spouse has

threatened to kill me,” accompanied by a request for help or advice. It could be about

someone else in danger, for example “My spouse threatened to kill his boss. What should I
Protection of Human Subjects in Large Surveys 30

do? Can you help me?” (There are also requests for help that would trigger mandated

reporting to authorities; see section 6.) It may come from a respondent to an anonymous

survey, from an identified survey respondent, or face-to-face in an interview. Interviewers

have effective and responsible ways to answer such cries for help but must take appropriate

precautions.

Implicit request

The ethical requirement of beneficence (National Commission for the Protection of Human

Subjects of Biomedical and Behavioral Research, 1979) and the code of ethics of the

American Psychological Association (1992) would seem to endorse the responsibility of

researchers to intervene when serious distress is discovered or caused by the research

procedure, but may conflict with the principles of respect for autonomy and privacy. If the

researcher is to take any steps in response to apparent need, should the respondent be

warned in the consent statement that such action would be taken? If this is done, what

effect would such a warning have on willingness to participate or to be candid? 

This set of questions was answered quite effectively in an experiment by Stanton, Burker,

and Kershaw (1991) on the effects of researcher follow-up of distressed subjects. Since

researchers studying depression often encounter respondents in serious preexisting

distress, these investigators sought to study the ethical responsibilities of such researchers. 

A literature search revealed that researchers’ responses to such subjects range from doing

nothing to recontacting both the distressed subject and a significant other. Stanton et al.

studied whether respondents adjust their reports of distress on three standardized measures

of depression as a function of their expectation of experimenter follow up. The content of

their informed consent was manipulated to reflect four levels of researcher intervention: (1)

no intervention, (2) provision of a list of treatment resources to all subjects, (3) follow-up

contact by the researcher with distressed subjects, and (4) follow-up contact by the

researcher with the distressed subject and a significant other. Their results were quite

dramatic and consistent across all three measures of depression. Respondents reported the

highest average level of distress in condition 2, in which all subjects were to receive a list of

treatment resources. The next highest average level of distress was reported in condition 1

(no intervention). Mean distress measures were markedly lower when subjects expected

the researcher to recontact distressed subjects (condition 3), and much lower when they

expected the researcher to recontact them and their significant other. Some of these effects

were slightly stronger for men than for women, but the gender differences were minor.

The implications for survey researchers are quite clear: 

• Respondents do not want to receive personal help unless they ask for it. However

they appreciate receiving information that would enable them to better understand

their situation or to seek help for themselves. 
Protection of Human Subjects in Large Surveys 31

• The expectation that the researcher might intervene personally is so distasteful to

most that respondents will falsify their answers to avoid this. 

• The expectation that the researcher might contact family members or significant

others is even more objectionable. 

Obviously, the simple provision of information to all subjects both provides the desired kind

of assistance and respects privacy and autonomy. Moreover it is easy to administer and the

interviewer will not need any specialized training.

The anonymous survey that may reveal serious distress is a related issue. Researchers

may administer anonymously surveys of topics such as mental health, stress and coping,

high-risk behaviors, health concerns, and experience of abuse or violence due to the

unwillingness of many respondents to reveal personal or embarrassing details about their

lives. How does one intervene to help anonymous persons in serious difficulty? The

Stanton et al. study emphasizes that personal or clinical intervention by the researcher is

unwelcome if not requested. Researchers have used the following approaches. The

interviewer may provide: 

• a list of treatment resources, self-help guides, or useful factual information to all

respondents, 

• ample opportunity for debriefing in which the respondent can express any concerns

or interests and receive a referral slip (with no name or other identifier) for a nearby

clinic if the respondent so desires, 

• an admission ticket to a nearby workshop or panel on the topic, or 

• web addresses to constructive web discussion groups on the topic. 

If respondents come from identifiable groups such as classrooms or workplaces the

researcher may arrange for the organization to provide an appropriate educational program

to the whole group. 

Explicit request

The interviewer can respond less awkwardly to an explicit request for help because there is

less chance of offending the individual by proffering assistance. The interviewer can offer

assistance in proportion to the nature of the request. In extreme situations, the interviewer

may step in, provide a therapeutic debriefing, and arrange for immediate referral. However

interviewers must avoid getting drawn into the dual role of therapist/helper and interviewer. 

They must be prepared to explain to the respondent that they are not qualified to help but

can provide the services of a competent caring person who can.
Protection of Human Subjects in Large Surveys 32

A specific recommendation: An experiment within the survey

The U.S. Census Bureau faces an unusual dilemma regarding response to requests for

assistance because its interviewers return to the same group seven times to study its

members’ experience of crime victimization. By offering referral information on any of the

first six interviews, Census may alter the phenomenon that it seeks to study. Census

interviewers currently respond to requests for help only after the last interview unless the

individual is in truly dire circumstances. In those extreme cases the interviewer responds

earlier in the sequence of interviews, but then drops that household from the survey,

replacing it with a demographically similar household. 

However the current Census practice raises several questions. How much difference does

a referral actually make in the life of a respondent who asks for help? Is it helpful? 

Harmful? Does the person who asked for help actually use the referral? What if

researchers provided a list of referrals to all respondents for all of the sorts of crime

victimization surveyed? Does the making of a referral, requested or otherwise, impact the

nature of the data subsequently gathered from that household? With what frequency are

requests made for assistance?

There are several implicit concerns in this discussion: (a) concerns for statistical accuracy of

estimates of amount of crime victimization, (b) concerns to learn whether providing a referral

actually changes the course of events in a victim’s life (other than impacting the kind of data

Census seeks to gather), (c) concern to help someone who reaches out, (d) concern to

provide possibly useful referral information to all respondents in return for their participation,

(e) concern about the frequency and nature of requests for assistance, and (f) concern that

Census avoids criticism for failure to help. 

If interviewers do not already record the incidence and nature of requests for assistance,

they should do so. What is the relative frequency of the various kinds of requests? What

are the demographic characteristics of respondents who make each kind of request? How

do requests change in relation to changes in crime rates? These baseline data would

provide a useful backdrop for the following experiments:

Experiment 1. Effects of referral sheets given to all respondents. Researchers would draw

a stratified random sample of respondents and divide them into experimental group

members and matched controls. After the first interview, researchers would give all

experimental group members a referral sheet recommending local sources of assistance for

each of the kinds of crime victimization surveyed. Control group members would receive no

referral sheet. At the end of the 3 years and seven interviews, interviewers would

reinterview members of both groups to learn whether there were kinds of relevant

assistance they had desired, whether they sought assistance, how they went about it, and

with what result. Interviewers would note whether the experimental (referral) group
Protection of Human Subjects in Large Surveys 33

members mentioned the referral sheet, used it, were more likely to seek referral of any kind,

and whether their data reflected a lowered rate of victimization than matched controls.

Experiment 2. Effects of appropriate referrals provided in response to requests for help. 

When interviewers are asked for help they would use a randomizing procedure to decide

whether to offer a referral — on odd dates give referral, on even dates do not. Interviewers

would use this random assignment procedure in all but the most extreme cases where

failure to make a referral would place the respondent in serious jeopardy. Interviewers

would note who asked for help and other pertinent details, including whether the respondent

was assigned to the experimental or control group, the kind of help requested, when in the

sequence of interviews the request was made, and other relevant details. At the end of the

seven interviews, interviewers would reinterview all members of the experimental and

control groups to learn whether they had sought and obtained assistance, how they went

about it, and with what results. Researchers would compare the experimental group’s

subsequent rate of reported victimization with that of the control group.

A conservative version of experiment 2 would employ the replacement sampling procedure

Census currently uses. Census would provide referrals, drop those household from the

survey, and replace it with a matched household. However Census would continue to

interview the dropped households for the entire 3-year sequence so that Census could

validly compare their data with that of the remaining households. The postexperiment

reinterview would be the same as that described above.

By including small-scale experiments such as these into its survey procedure, Census can

learn what happens when a referral is made, whether it is helpful, if it can be made more

helpful, and whether referrals significantly impact subsequently reported victimization. If

referral information is helpful to persons in avoiding or dealing with victimization, but impacts

statistical results, researchers might provide referral information only at the end of the 3-year

sequence or in response to those kinds of requests for which referrals were found to be

helpful.
Protection of Human Subjects in Large Surveys 34

6. Procedures for responding to mandates to report 

There are various statutes that require researchers to report revelations of certain kinds of

situations to appropriate authorities. These vary by State in terms of what must be reported

and who must report. Because of the State-by-State variability of mandated reporting,

national surveys that cross State boundaries must either modify their procedures for each

State or adopt the most stringent reporting standard for the entire survey. The kinds of

revelations that call for reporting to appropriate authorities may include child or elder abuse

or neglect and intention to harm others or oneself. 

It is assumed that the NCVS is exempt from mandates to report because the survey is

conducted under Title 13, the U.S. Census Bureau confidentiality statute. Probably, NCVS

interviewers would only report explicit verbal mention of abuse, which would occur rarely. In

response to such mention, the interviewer could encourage the individual to self-report. The

interviewers might have with them the 800 number of a nearby appropriate agency in that

State. (See appendix A for State phone numbers to obtain local agency information and

phone numbers.) This would satisfy both the moral duty to respond and the legal duty to

abide by conditions of Title 13.

Researchers should anticipate (rather than respond to) possible revelations. In the interest

of confidentiality, researchers should include a warning of the limits of confidentiality in the

informed consent for surveys or interviews that might conceivably reveal evidence of

reportable situations such as child abuse. While this might distort the random sampling

scheme and jeopardize generalizability by eliminating those who decline to participate, it

provides a higher level of confidence in those who choose to participate and eliminates the

legal and ethical horrors of having to consider breaching confidentiality to comply with the

law. If this procedure raises significant generalizability concerns, the researcher may

consider conducting a parallel study of parents who have been convicted of child abuse.

Child maltreatment

The Federal Child Abuse Prevention and Treatment Act of 1974 required that each State

establish child protective services and develop its own mandated reporting laws. By 1978,

State reporting laws were in place; Levine and Levine (1983) include the history of these

laws. State laws mandate the kinds of situations that must be reported and the kinds of

persons who must report — helping professionals only or anyone. There is considerable

State-to-State variability of laws and unpredictability of court decisions. Because most large

sample surveys cross State boundaries, IRBs and survey researchers must know the

relevant State laws and trends in court decisions, and should have policies and procedures

in place for interpreting those laws correctly. Specifically, researchers should consider State

law in the formulation of the informed consent statement about the limits of confidentiality, in

the education the IRB provides concerning kinds of evidence that require reporting, and in
Protection of Human Subjects in Large Surveys 35

the plans and consultation arrangements that the researcher and IRB develop for handling

such cases. See Kalichman (1999, pp. 14-23) for the definitions of abuse and requirements

to report that are excerpted from the reporting statutes of each State.

All States require reporting by certain helping professionals such as physicians,

psychiatrists, clinical psychologists, counselors, teachers, nurses, and social workers. Some

also require reporting by pharmacists and religious healers. In their efforts to locate makers

of child pornographic films, Colorado and Illinois require reporting by commercial film

developers. 

Anyone who has reason to suspect child maltreatment must report in the following nine

States: Florida, Indiana, Kentucky, Minnesota, Nebraska, New Hampshire, New Jersey, New

Mexico, and North Carolina. Obviously, interviewers working in these States are operating

under a different mandate than those working in the remaining States. However the

likelihood of their discovering reportable cases is largely limited to situations in which they

are explicitly told about the maltreatment, an event which would be exceedingly rare.

In evaluating a given protocol the IRB must consider whether there is a chance that the

researcher will find reasonable evidence of a reportable situation. Reporting laws vary

among States with respect to how one learns about the suspected abuse. In some States, a

report is required even if the reporting individual learns of it through a third party. Most

statutes require the reporting individual to testify in court proceedings, include a criminal

penalty for failure to report, and permit civil action against a professional whose failure to

report resulted in injury to the child. However all statutes provide immunity from a suit when

a report made in good faith turns out to be unfounded (Levine, 1982).

If the IRB believes that a reportable revelation might occur, it will require that the informed

consent statement include a warning about the limits of confidentiality. A statement adapted

from one developed by David Ruja (Gil, 1982) is:

What is discussed during our session will be kept confidential with two exceptions: I am

compelled by law to inform an appropriate other person if I hear and believe that you are in

danger of hurting yourself or someone else, or if there is reasonable suspicion that a child,

elder or dependent adult has been abused.

The same sort of warning must appear in the parental permission for research on a child. 

The problems of coping with mandatory reporting have resulted in creative approaches to

recruitment and consent procedures. One researcher who wished to study the responses of

non-abused children to anatomically correct dolls resorted to the following screening

procedure. She told parents that children could not participate who: (a) were under

treatment by a mental health worker, (b) did not speak English, (c) had been sexually
Protection of Human Subjects in Large Surveys 36

abused, or (d) had an infectious disease. Thus she could rule out children who had been

abused without knowing who they were.

The major problem faced by IRBs and investigators is not the State-by-State variability of

laws but the lack of clarity about their interpretation. It is not clear whether “reason to

believe” refers to a clinical hunch or to firm evidence, nor do these laws define what

constitutes abuse. This leaves researchers to consider cultural differences and to weigh

these against the possibility that the legal bureaucracy may be more harmful to the victim

than are their seemingly abusive relatives. The difficulties of defining abuse are many. 

Estimates of the amount of child abuse vary from 1% to 30% of all children depending on

one’s definition (Weis, 1989). How is the act perceived by the child — to teach an important

lesson (Corbin, 1987), to cure a disease (Gray and Cosgrove, 1985), or out of malice? 

Thus, added to the costs of breaching confidentiality is the possibility that reporting will harm

both the “victim” and the “perpetrators.” 

What is ethically responsible research behavior with respect to reporting? Should the

researcher stop and warn the subject who starts to mention abuse that it is reportable

information? Should the researcher actively seek and report evidence of abuse and

neglect? BJS and U.S. Census Bureau researchers do not have to solve this dilemma. 

Census interviewers can respond to mention of abuse by encouraging the respondent to

self-report and by providing an appropriate phone number.

For investigators who do not have statutory protection such as Title 13, this is an area in

which IRBs and researchers need consultation. They should establish relationships with

social workers, pediatric nurses and physicians, or clinical psychologists who are competent

to judge evidence that may trigger reporting. Some IRBs may not recognize when there is

risk of uncovering evidence of reportable activity. If risk is recognized, the ambiguity of

State laws concerning reporting can lead to extreme IRB decisions such as rejecting the

entire protocol or suggesting poor solutions. If the IRB does not have a knowledgeable

clinician among its members, it should call upon such a person for advice as needed. 

Clinically trained practitioners know how to interpret verbal or behavioral communications

and are able to determine the appropriate action. They probably are acquainted with the

Child Protective Services agency in their area and with the strengths and weaknesses of its

professional staff. They will know how to report suspected abuse in a way that maximizes

the likelihood of a beneficial outcome. 

IRBs that frequently review protocols for research that might happen upon evidence of

abuse should arrange permanent institutional resources to advise and support researchers

in this area. Without a trained clinician to advise on what constitutes “reasonable evidence,”

a risk-averse researcher or IRB may overreport to protect themselves from possible

prosecution. Their duty is to make a considered decision in consultation with others

qualified to advise, not to jump to conclusions and report without consultation or sound
Protection of Human Subjects in Large Surveys 37

advice. IRBs should develop guidelines for reporting that are tailored to the specific State

and local situation and to the resources available to them for consultation.

It is important that investigators at risk of discovering reportable abuse understand the

significance of warning respondents of their duty to report. Federal regulations regarding

confidentiality require that researchers warn subjects of mandatory reporting requirements,

and researchers must be ready to respond appropriately to signs of abuse. Realistically,

however, this requirement protects researchers and not victims. Moreover it does not apply

to the U.S. Census Bureau.

The most authoritative, comprehensive and helpful source of information on mandated

reporting of child abuse is Kalichman (1999), who provides comprehensive reporting

requirements.

Elder abuse

Elder abuse is a significant problem, and elderly respondents may self-report to NCVS

interviewers. In 1996 a national incidence study found that over 500,000 elders experienced

abuse that year, 75% of which was unreported. In 90% of cases, the perpetrator was a

family member, two-thirds of whom were adult children or spouses. The generally accepted

definitions of elder abuse include:

• Physical abuse which is the willful infliction of physical pain or injury, including

slapping, bruising, sexually molesting, or restraining

• Sexual abuse which is non-consensual sexual contact of any kind.

• Financial exploitation which is using the resources of an older person without their

consent for someone else’s benefit.

• Neglect which is failure of caretaker to provide goods or services necessary to avoid

physical harm, mental anguish, or mental illness.

The Administration on Aging (AoA), Department of Health and Human Services, is the only

federal agency dedicated to policy development, planning, and delivery of supportive

services to elders. There are also State elder abuse prevention programs. There is now

federal legislation requiring that States develop legislation similar to that for child

maltreatment. However this legislation is relatively new and the mandated programs are not

fully developed.

AoA funds the National Center on Elder Abuse, which is located at 1225 I Street, N.W., Suite

725, Washington, D.C.; phone 202-898-2683; e-mail NCEA@nasua.org. Their web site,
Protection of Human Subjects in Large Surveys 38

http://www.elderabusecenter.org, includes a State-by-State listing of toll-free phone

numbers for reporting elder abuse. Additionally, this web site contains comprehensive

information on elder abuse.

After reporting, the agency screens calls for potential seriousness, keeping the information

confidential. If the agency decides there is violation of State elder abuse laws, the agency

assigns a case worker (in emergencies, usually within 24 hours). If the victim needs crisis

intervention, services are available. If no abuse is substantiated, most agencies will work as

necessary with other community agencies to obtain any needed social or health services for

the elder. The elder has the right to refuse services offered.

As with child maltreatment, NCVS interviewers could respond to evidence of elder abuse

appropriately by urging self-reporting and providing the appropriate State hotline numbers. 

Intent to harm oneself or others

The intent to harm oneself or others are issues that primarily impact mental health clinicians

who probe into the motives and intentions of their clients. However it is conceivable that

feelings of despair or anger evoked in an interview on crime victimization could give rise to

statements about harming oneself or others.

Intent to harm oneself is discussed in section 5. An appropriate response is to urge the

individual to seek help and to give them an appropriate referral (phone number).

Intent to harm another is an issue that rarely arises in either psychotherapy or

social/behavioral research. However there are a few State laws governing the duty of

psychotherapists to respond to such a threat by warning the intended victim. Consequently

psychotherapists have had to include in their informed consent a warning of their duty to

report such events. The disposition of courts to find that there is a duty to warn an intended

victim has spread throughout the country. Despite the rarity of statements about intent to

harm another, the cases in which actual harm has arisen resulted in some surprising court

decisions and tremendous amounts of publicity. Under the protection of Title 13, the U.S.

Census Bureau need not warn of a duty to report and may not report. However the U.S.

Census Bureau may want to consider the kinds of referral information that it could provide to

individuals who are planning to take justice into their own hands. This might include a range

of alternatives that include counseling, mediation, and referral to appropriate law

enforcement agencies.
Protection of Human Subjects in Large Surveys 39

The U.S. Census Bureau should stay current about the development and spread of legal

mandates to warn intended victims. The case of Tarasoff v. University of California Regents

is instructive. A University of California Berkeley graduate student, Prosenjit Poddar,

revealed to a campus psychologist his pathological intent to kill Tatiana Tarasoff, who had

spurned his affections. The psychiatrist notified the police, who found the man rational. 

Poddar understandably did not return to therapy, and stabbed Tarasoff to death. Through a

series of appeals, the Tarasoff family persuaded the California Supreme Court (1976) that

mental health professionals have a duty to intervene in such cases. 

Depending on the case, intervention can include warning the intended victim, notifying

authorities, or securing an involuntary commitment. Although some therapists and

researchers consider this an unacceptable infringement on their duty to hold professional

information confidential, the Tarasoff law mandates that professionals must intervene

effectively when the client in therapy, including those in research on the therapeutic process,

reveals an intent to harm another. 

Other States have copied the Tarasoff law in various forms. Even in States that do not have

“Tarasoff” law, it is reasonable to consider whether victims or their families might seek to

apply the Tarasoff principle if a person indicates intent to harm and then commits a violent

act. According to existing law, the Tarasoff principle applies only to therapists. However

many IRBs require that researchers report to appropriate authorities any disclosure of intent

to seriously harm another, irrespective of whether the researcher is a therapist.

Some researchers seek to protect themselves from lawsuits for breach of confidentiality by

including in the informed consent a statement such as “Your data will be kept confidential

within the limits of the law.” This is inadvisable. Recent court cases have upheld

respondents’ rights to an informed consent that they can understand. IRBs are now

increasingly careful about how they state their obligation to report.

On their IRB’s web site, the University of Chicago provides the following example of a

possible statement for inclusion in a consent document regarding a survey of persons with

depressive symptoms:

Some of the questions in the written forms and the interview ask about how you are feeling

now. If your answers make us think that you might harm yourself or others, we are required

to notify the proper authorities of this risk.

The Census Bureau and BJS should prepare policy regarding a response to evidence of

child or elder maltreatment, or threats of harm to oneself or others with appropriate referrals,

and be sensitive to the requirements of investigators who do not operate under Title 13.
Protection of Human Subjects in Large Surveys 40

7. Vulnerable populations: Risks and special protections 

Vulnerable populations normally include children, teenagers, pregnant women, cognitively

impaired persons, and institutionalized or imprisoned persons. For purposes of the NCVS

and most other social surveys, the vulnerable populations requiring special precautions to

minimize risks probably also include the elderly, minorities, economically or educationally

disadvantaged persons, and other “institutionalized” groups such as students recruited as

research subjects by their teachers and employees recruited as research subjects by their

employer/supervisor.

IRB concerns

In the case of prisoners and children, Subparts C and D of 45 CFR 46 permit IRBs to

approve research that involves no more than minimal risk, or that may involve somewhat

more risk but will benefit the participants. Subpart C is pertinent to survey research in that it

provides extensive safeguards to confidentiality and against coercion so that prisoners are

afforded autonomy in their role as research subject. Subpart D is pertinent to survey

research in that it requires both parental approval and the child’s assent, except as noted in

section 9.

In the case of each of these populations, IRBs are sensitive to whether it is appropriate to

include the given population, consent is informed and autonomous, participation is free of

coercion, and the language and presentation are appropriate to the needs of the particular

population. Privacy and confidentiality have special significance for each population and

researchers should safeguard them appropriately. Specific fears, not necessarily warranted,

are germane to each group and investigators should learn and dispel them. Each group has

its own culture and language characteristics, which researchers need to understand and

respect.

Children and teenagers

The privacy needs of children and teenagers change markedly as they grow from early

childhood through the teen years. Thompson (1982) presents an excellent review of these

changes, showing that popular ideas about vulnerability decreasing linearly with age are

inaccurate. Older children and teenagers are more easily embarrassed, more concerned

about personal and informational privacy, and more likely to feel upset if they reveal more

than they intended. As they approach their teens children become sensitive and skeptical

about situations in which an interviewer might conceal or withhold information and upset at

the prospect of being deceived. In their efforts to forge their own sense of identity,

youngsters approaching and in their teen years would not want to be interviewed on a
Protection of Human Subjects in Large Surveys 41

sensitive topic in front of their parents. They might even offer to disclose information only on

the condition that the interviewer not reveal it to their parents. Because NCVS interviewers

are exempt from mandatory reporting under Title 13, this is less of a dilemma for them than

for other researchers. If appropriate, the NCVS interviewer might provide referral

information to a troubled teen or urge that they confide in their parents, but need not take the

matter farther.

Older children and teenagers are developing means of controlling their privacy. In middle

childhood, children begin to want to have private places of their own, and are likely to post a

sign on the door to their room saying “KEEP OUT.” By the teen years, youngsters are

intensely private, easily embarrassed, and interested in issues of informational privacy. 

Some will refuse to provide information if they feel intruded upon. Having a private place to

be alone, or to communicate with friends in privacy becomes extremely important. For the

teenager, promises of confidentiality are extremely important.

In contrast, young children, up to about age 7, are not easily embarrassed and have an

insouciant charm and candor that comes from lack of self-awareness. Their means of

protecting themselves from unwanted intrusion is their parent’s protection of their privacy. 

Younger children’s sense of privacy is enhanced when their parent is present during an

interview. By the same token, the requirement of a parent’s permission to have the child

interviewed serves to protect the overly shy or emotionally unstable child from the

researcher’s intrusion. 

The younger the child, the more important it is for investigators to pilot test consent (assent)

information and surveys to determine whether children can understand the language. 

Young children, under age 6, usually do not understand statements dealing with hypothetical

situations, and have difficulty with quantifiers and relational concepts. As children mature,

they develop increased understanding of the hypothetical or conditional. The use of long

sentences that would be understandable to an adult is problematic with younger

respondents. Some guidelines for communicating with children in survey research follow:

• Use short sentences with easy words to improve comprehension.

• Avoid unnecessary clauses that complicate the question.

• Avoid use of the passive voice.

• Examine the child’s understanding of words. The interviewer might ask “Tell me

what a .....is?”

• Make sure the child understands the context of the question, perhaps by prefacing a

question with a statement like: “Remember the time when (such and such)

happened.”
Protection of Human Subjects in Large Surveys 42

• Avoid asking a young child “why” they did something, which the child will likely

perceive as critical and make the child feel defensive. It may work better to

rephrase the question as a “what” question such as “What made you feel that way?”

• Rephrase questions to check for comprehension when the child seems to lack

comprehension.

Pregnant women

Since it is conceivable that pregnant women’s experience of crime victimization may differ

from that of others, there is clear justification for their inclusion. The only regulatory issue

pertaining to their inclusion is whether their participation in any way jeopardizes their health

or that of their fetus. This is unlikely to happen in survey research.

Cognitively impaired persons

Although there are no regulations pertaining to research on the cognitively disabled, there

has been considerable discussion and concern (see at http://ohrp.osophs.dhhs.gov/, go to

IRB Handbook) about interpretation of the regulations in their case. The primary concern is

that persons with psychiatric, cognitive, or developmental disorders, or persons who are

substance abusers may lack capacity to understand what interviewers are asking them to do

or to make a reasoned decision about participation. Many in this population are

institutionalized, which further compromises their ability to exercise free choice. 

Institutionalized persons may want to participate in research to appear “rational” and

“cooperative” to those who make decisions about their release.

There is a growing consensus among ethicists that researches should select cognitively

disabled persons as subjects only when the research bears some relationship to their

situation. In the case of the NCVS, the choice of those cognitively disabled persons who are

competent to respond to the survey may be highly appropriate since they may be particularly

vulnerable to certain forms of victimization. However from a researcher’s point of view the

issue is whether they are competent to respond accurately to the survey. This underlines

the more fundamental issue that the interviewers, the investigators, and the IRB need to

work closely with persons who are knowledgeable about and experienced in working with

cognitively impaired populations to decide whether and how to include them in the research.

Most that has been written on this topic pertains to biomedical and pharmaceutical research,

and it is not easy to apply the same ideas to survey research such as the NCVS. OHRP’s

primary concern is that incompetent subjects with court-appointed legal guardians provide

consent in a responsible fashion. Persons deemed incompetent to decide about
Protection of Human Subjects in Large Surveys 43

participation probably would also be incompetent to participate in survey research. 

Conceivably, family members could provide a more accurate account of the crime

victimization of cognitively impaired persons. However persons having minor cognitive

impairment who are not institutionalized might be deemed competent to participate in the

NCVS. They might be included, with advice and guidance from persons who are

knowledgeable and experienced in administering similar instruments to cognitively impaired

individuals.

Elderly persons

The elderly are a heterogeneous group, not usually in need of special protections, except

under circumstances of cognitive impairment and institutionalization. However investigators

sometimes fail to include them in research because of difficulties in recruiting them. Older

persons tend to avoid events that interrupt their daily routine, are inconvenient, or do not

directly benefit them (Sachs and Cassell, 1990, p. 236). They are more likely than younger

persons to drop out of studies so that investigators may need to recruit more elderly to

account for this. Elderly persons who live alone tend to have warranted fears of scam artists

and others who would harm them. The use of gatekeepers such as directors of senior

centers may provide useful assistance in identifying the investigator as someone it is safe to

associate with. Elderly persons who live with younger relatives have a different problem —

keeping parts of their life private from younger members of their family. Researchers need

to recognize this problem. The interviewer should ensure that the interview takes place in a

private setting and that they can conduct a phone interview under conditions of privacy at

the elder’s end of the line.

Even those elders who are well educated and have kept abreast of news and changes in our

culture may use a somewhat different vocabulary than younger cohorts and may be

unfamiliar with some new concepts. The interviewer needs to be sensitive to these

possibilities and be prepared to rephrase questions.

Elders may have hearing and vision problems that interfere with responding to a survey. 

Hence elders may require more time, large-print material, and patient explanation until the

hard of hearing are able to accurately understand.

The very elderly, on average, are far less educated than younger cohorts. Those who have

had little formal schooling are not test wise. Some of the formats of written surveys such as

item ranking, Likert scales, and multiple choice items are foreign to them, hence difficult for

them to use (Levine, 1982). Generally, education, health status, and inadequate

communication about the research, rather than age, are responsible for lack of

comprehension and recall (Sachs and Cassel, 1990, pp. 235-236). When interviewing

poorly educated elderly, interviewers should use a more conversational approach to yield
Protection of Human Subjects in Large Surveys 44

more satisfactory responding. The wide-ranging demographic differences and

corresponding response differences underline the importance of adequate stratified

sampling, with oversampling of those segments of special scientific interest to the project.

Minorities

The inclusion of racial and ethnic minorities in national surveys is vital to the generalizability

of the results. However minority groups frequently have a negative perception of research,

and it can be difficult to recruit minorities because they fear lack of confidentiality. Focus

groups within minority communities can provide useful communication between

investigators and community members. In that context, researchers can explain the aims

and process of the research and the safeguards to confidentiality. Investigators can learn

the perceptions and fears of community members, correct erroneous perceptions, and allay

fears. A second reason to do pilot work within the relevant minority communities is to learn

about possible linguistic problems. Often it is not simply a matter of obtaining an accurate

translation from standard English to another standard language. The combination of

dialects and variants can make standard translations inadequate for accurate

communication. For example, immigrants from Mexico may speak a variant of Spanish

according to their home region, and the Spanish of Mexico itself differs from the Spanish of

Central America.

Members of racial or ethnic minorities in the United States are relatively more likely to have

problems of transportation and child care to participate in studies, especially when repeated

interviews are required. Interviewers should be sensitive to these problems and be

prepared to offer solutions.

Interviewers also need to be sensitive to cultural norms of the respondents. Researchers

should include members of the given cultural group on the research team to help ensure the

survey’s success. Investigators should consult with other researchers, clinicians, or

outreach workers who have worked with the given cultural group in a given location. 

Federal Regulations recommend that IRBs reviewing research involving racial or cultural

minorities have a representative of that group on the IRB or invite a consultant from that

group to assist with review of the protocol.

Students, employees, and institutionalized persons

Issues of coercion and confidentiality arise with respect to these groups of persons. Will

their gatekeeper, including their employer, teacher, physician, or jailer, pressure them to

participate? Will researchers keep their responses confidential and not disclose them to the

gatekeeper or others? Do the respondents perceive that they will win favor within their

institution by participating in the research? Is recruitment truly a voluntary process? As a
Protection of Human Subjects in Large Surveys 45

safeguard, are respondents given every opportunity to refuse to participate during the

consent procedure, and to discontinue their participation at any point in the procedure? If

they do not complete their participation in the research, is this fact kept confidential from

their gatekeepers?

Economically or educationally disadvantaged persons

Economic and educational disadvantage tend to go together, but create different problems. 

The economically disadvantaged person is easily recruited when large financial incentives

are offered, and their advocates would argue that large financial incentives may be

appropriate. However IRBs are wary of the incentive that is so large that it is coercive. 

Moreover, if respondents perceive that the financial incentive is contingent on completion of

the interview, there is the double threat of coercion and lack of candor. Noncontingent

financial incentives are more beneficial in all respects, and they also are more effective in

recruitment (Singer, Groves, and Corning, 1999).

Economically disadvantaged persons may require financial incentives that are higher than

those for economically secure individuals. These incentives are likely to include costs of

child care and transportation.

Middle-class interviewers may be ineffective at establishing rapport and communicating

effectively with poor people. Some researchers employ and train as interviewers persons

who are demographically similar to the respondents. For example, Kim (1997) used poor

women to survey poor women in an evaluation of federally funded job training programs to

determine whether job placement rates and earnings of program participants are higher than

those of nonparticipants. Kim incorporated feminist approaches, including asking openended questions rather than multiple choice, that resulted in a somewhat more qualitative

set of responses. The richness of detail provided perspectives that would otherwise have

been overlooked. Kim reports that the approaches she used reduced interviewer bias,

improved response rates, and facilitated trust in answering sensitive questions. The poor

women trained as interviewers learned about scientific inquiry and earned money.

While educational disadvantage tends to be associated with economic disadvantage, that

association is not always present. The respondent who seems not to understand questions

or instructions and who cannot respond appropriately in test-like formats may simply be

inexperienced with school-type activities. The respondent may be perfectly capable of

describing the relevant experiences and attitudes, but not in the formats presented. More

seriously, the respondent may be illiterate. Many apparently middle-class people are

illiterate but have developed considerable skill at faking literacy. The interviewer needs to

be sensitive to this possibility and be prepared to switch to an oral format that allows the

respondent to answer in a more conversational and open-ended way. 
Protection of Human Subjects in Large Surveys 46

8. Efforts to minimize refusals to participate in sensitive surveys

A major ethical value underlying survey research is that it yield valid and useful knowledge 

— a goal that is unattainable unless respondents participate candidly. However most of the

human subject issues raised by IRBs and the Common Rule concern the protection of

human subjects, not their willingness to participate and be candid. Consequently IRBs

sometime reject approaches that seem to provide “too much” motivation to participate. For

example, although it is well established that street people, particularly drug addicts, will not

participate in research unless they are paid in cash, some IRBs do not want to approve this

practice because such respondents will use the money to buy more drugs. IRBs do not want

the monetary incentives to be more than the individual would ordinarily earn for that amount

of work time. Thus airline pilots who are subjects could be paid far more to participate in a

survey than a poor person, a notion to which many poor subjects and their advocates object. 

There are two kinds of efforts: efforts to induce people to agree to participate in sensitive

surveys, and efforts to induce them to give honest answers to sensitive questions.

Efforts to induce participation

There are two factors that consistently and substantially increase participation: payment of

monetary incentives and number of contacts. Regarding number of contacts, the standard

practice is to recontact nonrespondents up to three times. By the third contact, investigators

get response rates that are usually at least 30% higher than they would have gotten with

only one contact. This procedure is viable even with mailed anonymous surveys. 

Researchers include a postcard containing the respondent’s name with the survey that the

respondent is to drop in the mail at the same time the survey is mailed. Investigators send

repeated mailings only to those who have not mailed their postcard. The postcard could

also be used by the respondent to indicate which incentive they want in return for

participation.

The effects of monetary incentives are more complicated and interesting. Church (1993)

performed a meta-analysis of the experimental literature (38 studies) on the effects of

incentives in mail surveys. He classified incentives into two categories: whether they were

monetary or non-monetary, and whether they were offered with the initial mailing or made

contingent on the return of the questionnaire. His conclusions were that:

• Prepaid incentives are more effective than promised incentives, such as incentives

that are contingent on completion of the survey.

• Prepaid monetary incentives are more effective than gifts offered with the initial

mailing.
Protection of Human Subjects in Large Surveys 47

• Response rates increase with increasing amounts of money

• The offer of contingent (promised) money and gifts does not significantly increase

response rates.

Church’s study leaves unanswered the question of whether the effects of incentives on

response rates vary by mode of interviewing. Could Church’s findings be replicated with

face-to-face or phone interviews? Singer et al. (1999) performed a meta-analysis of 39

experiments and used the following independent variables: amount of incentive, type (gift or

money), timing (before the interview or promised and given afterward), and burden (whether

the interview was longer than an hour or if it included a diary, test, sensitive questions, or

panel study). In addition to their main dependent variable, response rate, they also

examined quality of data (nonresponse and number of words in response to open-ended

questions), cost per interview, and relationship of response to incentives with demographic

variables.

Singer et al. essentially replicated Church’s mail survey findings with telephone and face-toface survey findings. Moreover they showed that incentives are effective in increasing

response rates in both low- and high-burden studies, and for fresh respondents, panel

respondents, and those who have refused to respond previously. However they found that

the effects of incentives are relatively modest. Some of the details are pertinent:

• Respondents preferred prepayment to promised payment even in face-to-face

interviews.

• The effects of incentives are linear within the limits of the monetary incentives

offered. The money offered varied from $1 to $100; 60% of incentives were less

than $10; mean value was $11.39.

• Gifts were significantly less effective, even controlling for the cash value of the

incentive.

• It was expected that high-burden surveys — surveys lasting more than 1 hour;

surveys with ancillary tasks such as a test or diary, surveys with repeated or panel

testing — would benefit more from high incentives than would low-burden surveys,

but only an insignificant interaction was found.

• When low-burden phone or face-to-face interview studies were analyzed separately,

they found that incentives had the same effects.

• When studies involving a diary, test, or other self-administered instrument were

excluded, the effects of incentive remained significant. 

• The higher the response rate to the no-incentive condition, the smaller the effect of

an incentive. 

• About one-third of the studies analyzed were unpublished, and Singer et al.
Protection of Human Subjects in Large Surveys 48

compared their findings with those of the published studies. They found no

differences.

• Incentives tend to yield better quality responses.

• Paying an incentive tends to produce higher numbers of respondents in

demographic categories such as low income or nonwhite respondents that might

otherwise be underrepresented in sample surveys.

Singer et al. note that an important question that remains unanswered is whether the costs

of surveys with incentives is cost effective in relation to the savings, including fewer calls

and mailings to respondents. 

This elegant analysis also left unanswered the question of whether respondents would

regard it as inequitable to offer a monetary incentive to non-respondents. Subsequently,

Singer, Groves, and Corning (1999) studied whether cooperative respondents would

perceive the use of incentives to convert refusals as inequitable, and whether those who

learn of the practice will be less willing to participate in future surveys. Singer et al. found

that survey respondents are sensitive to issues of fairness in the distribution of incentives,

but these issues are not especially salient and are not among the factors that motivate

survey participation.

Efforts to evoke answers to sensitive questions

A central concept for understanding how to evoke answers to sensitive questions is the

“foot-in-the-door” technique (discussed in section 2). Respondents who are first asked

innocuous, then mildly sensitive, and then very sensitive questions will cooperate and

answer such a sequence of questions. However they would refuse to answer the most

sensitive questions if such questions were asked in isolation or near the beginning.

A second major concept has to do with obtaining honest answers to sensitive questions. 

This problem includes self-report bias, in which respondents underreport disapproved,

embarrassing, or illegal behavior, and overreport socially approved behaviors. Persons tend

to present information about themselves in a way that they believe would enhance their

worth to the interviewer. Sudman and Bradburn’s (1982, chapter 3) classic list of

approaches to asking sensitive questions includes both of these concepts. They describe

ways to manipulate the context or presentation of questions to lead from general/neutral to

specific/sensitive, and ways to create a more permissive frame of reference. Current

research has sought to refine these powerful techniques through experimentation.
Protection of Human Subjects in Large Surveys 49

A third major concept has to do with the respondent feeling respected and understood. 

Respondents may engage in self-report bias, lie, or refuse to answer sensitive questions if

they feel badly about answering a sensitive question honestly. These problems are

exacerbated when respondents feel that an “outsider” is poking insensitively into their

business. Cultural sensitivity can sometimes help solve this problem. Interviewers can be

matched with respondents, with respect to life experience, gender, ethnicity, dialect, or

whatever other demographic factor may be relevant.

Researchers have tried various solutions to these problems, and there is a lot of literature

about these issues as they pertain to survey research. Three kinds of literature are

reviewed here:

• Research on data collection formats, such as computer-assisted self-administered

surveys and sealed booklet surveys, which reduce self-consciousness because the

respondent interacts privately with a computer, not with the interviewer.

• Research on better ways to ask sensitive questions.

• Research on interpersonal factors, including effects of presence of third parties at

the interview, the data collection format, and development of better ways to ask

questions.

Data collection formats

A promising way to obtain answers to sensitive questions is through self-administration of

these questions. A large number of studies demonstrate that self-administration via

computer increases levels of reporting compared to administration of the same questions by

an interviewer. Respondents are apparently reluctant to admit to an interviewer that they

have engaged in illegal or otherwise embarrassing activities. 

Tourangeau and Smith (1996) reviewed many of these studies and observed that the effects

of the computer are no more desirable than other kinds of self-administered survey. 

Moreover with a self-administered computer or written questionnaire, persons with poor

reading skills will have difficulty comprehending the questions. Tourangeau and Smith

propose that audio computer-assisted self-administered interviewing (ACASI) may solve this

problem. ACASI may preserve the privacy of self-administration without requiring much

respondent literacy. In one study, which controlled for the novelty and other aspects of

computer use, they examined the willingness of respondents to admit (via computer) to

extremely sensitive questions, including aspects of cocaine and marijuana use. They

compared computer-assisted personal interviewing (CAPI) in which the interviewer was

present, computer-assisted self-administered interviewing (CASI), and ACASI. 
Protection of Human Subjects in Large Surveys 50

With CAPI, the questions appeared on the computer screen, the interviewer read them to

the respondent, the respondent answered the interviewer, and the interviewer then entered

the response. 

With CASI, the respondent interacted directly with the computer after the interviewer gave

instructions and helped the respondent get started. With each question, the respondent

receives a reminder at the top of the screen on how to back up to the prior question, go on to

the next, or refuse to answer a question.

With ACASI, the information displayed on the screen is simultaneously played via

earphones. With both the CASI and ACASI conditions, the interviewers were instructed not

to look at the screen while the respondent completed the question, but to listen for any

beeps indicating the respondent was having problems with the computer. 

Tourangeau and Smith found remarkably large differences in reporting of illegal drug use

and multiple sexual partners, with the largest number of instances reported with ACASI and

the smallest number of instances reported with CAPI. Others have also found that ACASI is

superior to other methods. Moreover it can be used in a variety of settings, including homes. 

For example, Lesser and O’Reilly (1997) reviewed established strategies, self-administered

questionnaires, and indirect questioning techniques to examine their effect on willingness to

report stigmatizing behavior. They discuss ACASI extensively, describing its features and

the results it has yielded. Similarly, Kissinger et al. (1999) report positive results using

video-enhanced computer-assisted interviews and ACASI.

A “low tech” approach to achieving privacy is to administer the interview using a sealed

booklet which the respondent fills out in the presence of the interviewer, providing anonymity

to the respondent. Compared to the face-to-face interview, this method produces greater

willingness and accuracy of answering in response to sensitive questions. However it does

not solve the problem of respondents having poor reading skills (Makkai and McAllister,

1992).

Development of better ways to ask sensitive questions

A well-documented finding of experimental cognitive psychologists is that the way a question

is framed will affect the way it is answered. Willis (1997) described a variety of

developments designed to reduce response error using cognitive laboratory techniques in

developing a survey. He described ways in which investigators can examine the thought

processes of subjects in relation to the various ways questions are framed. The variables

studied include the way respondents are introduced to the interview, if researchers test for

comprehension, how researchers avoid embarrassing respondents, the effects of social
Protection of Human Subjects in Large Surveys 51

cues from the interviewer, use of demographic information in formulating questions and

interpreting responses, and exploration of what makes questions sensitive and for what

kinds of respondents.

Research on illegal or embarrassing behaviors has systematically examined the old

“everybody does it” approach developed by Kinsey et al. (1953). “Counterbiasing” means

framing the question so that the particular behavior is made to seem relatively frequent,

normal, or unremarkable. Researchers have studied counterbiasing in various contexts and

found that it is effective in producing more admissions of socially undesirable behavior. 

Raghubir and Menon (1996) and Tourangeau and Smith (1996) describe counterbiasing

methods in a variety of settings.

Interpersonal factors

The research on the effects of interpersonal factors illustrates that the degree of sensitivity of

the issue and contextual factors are critical to the results. 

Johnson and Moore (1993) examined the effects of interviewer gender in a telephone survey

of attitudes regarding sale and consumption of pornography. They found that interviewer

gender effects were not significant.

Smith (1997) examined data from the 1994 General Social Survey (GSS) to determine

whether presence of a third party such as a spouse or child effects responses to questions. 

For married respondents, the presence of a spouse did not effect answers to 15 questions

about marriage and sexual matters. Among 13 questions about values, answers were

scarcely effected by presence of a child, with one exception: Respondents appear less

approving of premarital sex when a child age 6 or older is present. Self-reported items on

health were somewhat affected by the presence of others. Overall the impact of third parties

on survey responses was rare and small. Smith offers a host of good suggestions on ways

to gain a better understanding of third-party effects. Given the similarity between his work

with the GSS and the NCVS project, his comprehensive discussion of possible effects of

third-party presence in such surveys would no doubt be of interest to BJS and Census.

Darrow et al. (1986) examined a series of studies of the responses of homosexual men to

sensitive questions asked by physicians to learn the effects of place of interview and gender

of interviewer. The difficulties of adjusting results to avoid confounding may have weakened

the findings. However the conclusion was that the gender of interviewer and place of

interview seemed to have little influence on the respondents. The authors speculate that the

motivation to gain accurate answers and medical assistance may have overridden any

deterrents to responding.
Protection of Human Subjects in Large Surveys 52

Kim (1997) found that having poor women interview poor women, using an open-ended

interview format, evoked more detailed information and increased willingness to answer

questions (see section 7).

The study by Barker and Cooper (1996) is another example of how little difference sensitive

questions make in most survey research contexts. They included a sensitive question about

sexual health in half of the 600 “lifestyle” questionnaires sent to individuals in Solihull, West

Midlands. After 3 weeks, nonrespondents were sent a reminder and a second

questionnaire. The response rates were virtually the same for the “sensitive” and

“nonsensitive” groups for both the initial and the follow-up questionnaire. However their

“sensitivity” induction may not have been strong enough to reveal possible effects.
Protection of Human Subjects in Large Surveys 53

9. Survey procedures for informed consent with special procedures for obtaining

consent for respondents under age 18

Informed consent is a primary ethical requirement of research with human participants. It

expresses respect for the autonomy of persons by permitting them to make a reasoned

decision of whether to participate. The process of informed consent is far more than a

consent form or a one-time discussion. Informed consent should consist of friendly ongoing

communication in which the individual is free to raise questions throughout the research

process. In repeated-measure research such as the NCVS, the initial consent process may

seem perfunctory to the respondent. As questions arise in the respondent’s mind, the real

informed-consent communication can take place. It is appropriate that the interviewer be

prepared to engage in the ongoing communication required to continue to inform the

respondent as appropriate. 

Regulatory requirements

The informed consent process is governed quite strictly by federal regulations (see 45 CFR

46.116(a)). Although it is intended as a respectful communication process, it is often treated

as a bureaucratic formality by investigators seeking to conform to regulatory requirements. 

Informed consent is legally required unless the following four conditions are met:

1. The research involves no more than minimal risk.

2. Waiver or alteration of the process will not adversely effect the rights and welfare of

the subjects.

3. The research could not practicably be carried out without the waiver or alteration.

4. When appropriate, subjects are provided with additional pertinent information after

they have participated in the study.

Documentation (45 CFR 46.117) involves written consent information that the subject signs,

and the subject receives a copy of the consent information. Subjects tend to confuse the

signed consent form with informed consent. This confusion does not make for good

communication or a friendly process. It is possible to obtain informed consent that meets

the criteria set forth in the federal regulations and to create a friendly, open, ongoing

communication process. However the formal criteria do not foster ongoing communication.
Protection of Human Subjects in Large Surveys 54

As discussed in section 7, many individuals, particularly members of minority populations,

do not want to sign documents but would participate in surveys otherwise. Fortunately,

written documentation may be waived if (a) the documentation is the only link that identifies

the subject with sensitive information, or (b) the research presents no more than minimal risk

and involves procedures that do not require written consent when performed outside of a

research setting (45 CFR 46.117). Most survey research meets one of these criteria. 

The regulations governing informed consent were written for biomedical research. Issues

that might be important to a respondent in a survey are not “risks and discomforts” or

“alternative procedures or courses of treatment,” but rather what will the interviewer ask,

how long the survey will take, and how will investigators keep identified data confidential. 

The adaptation of regulatory requirements for purposes of survey research has required

ingenuity.

In a perfunctory effort to comply with the federal regulations, many consent forms are written

in such a legalistic, vague, or specialized (scientific) language that they are

incomprehensible to most respondents. It is important that researchers keep the

communication process of informed consent understandable and engaging, and that they

answer the questions that are important to the respondent. Interviewers should remember

that informed consent is a two-way conversation, and a cognitive process that properly

involves comprehension, trust, consideration, and autonomous decision-making on the part

of the participant.

When survey research is conducted with minors, parental permission and documentation of

that permission, as well as assent of the minor, are normally obtained. However IRBs may

waive parental permission and documentation under the conditions in 45 CFR 46.117. 

While the legal requirements may be relaxed, ethical and practical considerations would still

require the ongoing communication process of informal informed consent. It is especially

important that the interviewer explain the research to the child in age-appropriate terms the

child can readily understand.

Informed consent as practiced in survey research

When survey researchers attempt to follow the formal requirements for informed consent a

number of questions often arise:

• How can informed consent foster respect for privacy in survey research?

• How much information do subjects want to receive?

• How much and what kind of explanation are appropriate in obtaining children’s

assent?
Protection of Human Subjects in Large Surveys 55

• How can the researchers make a child understand complex details?

• When complex issues need to be explained, such as confidentiality and the limits to

which it can be assured, how can the interviewer be sure the respondent

understands?

• How can a researcher conduct and document consent in Internet surveys?

Consent and privacy

Informed consent is supposed to be a transaction, contract, or agreement between the

investigator and the respondent. Moreover it is supposed to be ongoing, two-way

communication in which the participant can renegotiate the agreement as needed. There

are various reasons why the respondent may want to reopen the conditions of the research. 

For example, a survey that is conducted in a face-to-face interview or by phone may take

longer or involve more unwanted experience than the respondent anticipated when initially

consenting to participate. 

Respect for privacy means:

• Giving persons freedom to pick and choose the time and circumstances under which

facts about themselves are disclosed,

• Permitting them to share or withhold from others their attitudes, beliefs, behavior,

and opinions, and

• Permitting them to reject information they do not want to receive. 

All three of these conditions are pertinent to NCVS interviews. For example, setting up a

phone interview about crime victimization entails some agreement about a convenient time

and place and the respondent’s willingness to participate. Once the interview begins, the

respondent may feel constrained to answer questions that seem invasive, or that are being

asked after someone else has entered the room and can overhear the conversation. The

respondent may feel the questions to be upsetting. When this point is reached, the interview

is damaged. A better procedure is to make sure the interview occurs under circumstances

that are truly comfortable for the respondent, and for the interviewer to be sensitive enough

to realize that the respondent would rather not answer or would like to resume the interview

later. Such consideration on the part of the interviewer may seem costly in the short run, but

in the long run it means that:

• the relationship of mutual trust and respect between respondent and interviewer is

maintained and strengthened.
Protection of Human Subjects in Large Surveys 56

• the likelihood that the respondent will remain in the study for the full cycle is

increased.

• the ease of scheduling future interviews is enhanced.

• the candor and mindfulness with which the respondent answers questions is

increased.

• a smaller sample that produces high-quality data can be used in place of a larger

sample that produces flawed data.

How much information do respondents want?

Since the inception of IRBs, social and behavioral scientists have pointed to the importance

of providing reasonable amounts of information as opposed to overwhelming respondents

with lengthy and complex consent statements. Singer and Frankel (1982) studied the

effects of lengthy and detailed consent compared to simpler consents and found no

significant differences in response rate or quality (see section 11). Singer (1993) reviewed

the literature on informed consent in surveys, most of which focuses on the effects of

promises of confidentiality. While promises of confidentiality are marginally important to

respondents in sensitive research, they are counterproductive in nonsensitive research.

Investigators who conduct social and behavioral research observe that the formal content of

the consent is largely ignored. Respondents focus on whether they like and trust the

researcher. Some physicians have remarked that physicians who have good

communication skills and a caring manner don’t get sued. The formality of informed consent

has little or nothing to do with the way patients feel about their treatment. 

Guidelines for obtaining children’s assent

In research on children, it is particularly important to regard informed consent as a friendly,

understandable, engaging communication process. Section 7 includes guidelines for talking

to children to obtain their assent. Researchers should present the information in a

conversational manner that is responsive to the child’s questions and comments. 

IRB websites contain some good examples of assent statements designed for children. The

Social and Behavioral Sciences IRB at the University of Chicago has an excellent example

(http://humansubjects.uchicago.edu/sbsirb/).
Protection of Human Subjects in Large Surveys 57

Beyond oral communication, it may be useful to show children what they will be doing, and

possibly show them a videotape of another child participating in the procedure.

Ensuring comprehension of complex issues

The rise of the use of computers in self-administered survey research has intriguing

possibilities for providing informed consent information in a tutorial context. Although this

procedure has been most seriously considered in the case of risky biomedical research, it

has special potential for survey research involving computer-assisted self-administered

surveys. In the case of surveys conducted on the Internet, the consent process can readily

be administered on-line at the outset as an automated tutorial, so that respondents can not

advance to the survey until they demonstrate comprehension of the consent statement.
Protection of Human Subjects in Large Surveys 58

10. Effects of signed consent on response rates and other aspects of conducting a

survey or other study

In 46.117, “Documentation of Informed Consent,” the Common Rule sets forth the

requirement that the interviewer read the consent form to the subject or a legally authorized

representative or give the form to the subject to read, and that the subject or the

representative sign the form. A number of alternative procedures are also set forth in the

case of illiterate subjects or subjects who do not wish to sign a document for some reason.

Because there are various subcultures in the United States that are disinclined to sign

documents, the general requirement of signed consent poses complications for research

that depends on random sampling, such as sample surveys. 

Regulatory issues

The issue of signed consent does not arise in some survey research for two reasons:

• Exemption of anonymous adult surveys from the regulations. Research involving

survey or interview procedures with adult subjects is exempt from the Federal

Regulations unless the information obtained is recorded in such a manner that the

subjects can be identified and the data could place the subjects at risk of criminal or

civil liability or damage the subjects’ financial standing, employability, or reputation

(45 CFR 46.101(b)(2)). However some IRBs review all surveys even if they meet

the criteria for exemption.

• Exemption from signed consent. An IRB may waive signed consent, even when

surveys are not anonymous, when the principal risks are connected with breach of

confidentiality concerning the subject’s participation in the research — such as in the

study of sensitive topics — and the consent document is the only record linking the

subject with the research (45 CFR 46.117(c)). An IRB may waive signed consent or

other elements of the consent procedure when it finds that the research involves no

more than minimal risk to the subjects and involves no procedures for which written

consent is normally required outside of the research context.

It is important to note that whenever an IRB exempts a survey from signed consent,

including the consent of the primary or secondary subject, the IRB must record its analysis of

the ways in which the protocol meets the above criteria in the documentation of its decision.
Protection of Human Subjects in Large Surveys 59

In the case of high-risk interviews in which the only link to the respondent might be the

signed consent, researchers can use other procedures such as witnessed consent. For

example, a researcher interviewed a 16-year-old concerning his gang membership and his

decision to leave the gang. Because his parents did not know about his gang involvement,

researchers waived parental permission. Because his decision to discuss the gang and to

contemplate leaving it could be very dangerous to him, the interview was conducted out of

town at a small restaurant during non-meal hours. A colleague of the interviewer sat in an

adjacent booth; overheard, witnessed, and documented the oral consent; and served as

lookout in case a likely gang member entered the restaurant.

Background considerations

It is well-documented that there are many groups within the United States that are very wary

of participating in research and signing any documents, especially consent forms connected

with a government research project. These conclusions are drawn from many sources,

most notably (a) the U.S. Census Bureau which must contend with problems of

undercounting among those populations that are skeptical of being enumerated, and (b)

cultural anthropologists who focus primarily on those American cultures that are politically,

educationally, or economically marginal.

The problems experienced by the U.S. Census Bureau are particularly relevant to this

discussion. Census has had a long tradition of maintaining the confidentiality of its data, but

the number of people willing to be enumerated has declined. The proportion of non-white

individuals who are unwilling to be enumerated is about triple that of white individuals. 

Turner (1982) describes the findings of several key studies of public attitudes toward being

identified in surveys, including studies by the American Statistical Association, the National

Academy of Sciences, and the U.S. Census Bureau. Since that report, the undercounting

situation with respect to minority populations has worsened.

Cultural anthropologist Murray Wax, in his testimony before the National Bioethics Advisory

Commission (2000), poignantly described the challenges facing cultural anthropologists who

seek to study unassimilated Hispanic and Indian cultures. If their IRB insists on signed

consent, their research is rendered impossible. The reasons for refusal to sign documents

varies. Among many Native Americans, there is a long history of losing land by signing

documents they do not understand. Among members of populations who are conducting

underground commerce, there is fear of identification and prosecution. Among members of

many non-Western cultures, there is the belief that a person’s word is what counts, and that

requiring marks on a piece of paper (the signature or X) is meaningless and insulting.

Both Singer (1978) and Trice (1987) found that a significant number of respondents refused

to participate in a survey if required to sign the consent form, but would participate
Protection of Human Subjects in Large Surveys 60

otherwise. There has been no recent research on the effects of signed consent on response

rates. However, if more current data were desired, specifically with respect to the NCVS,

Census could readily research this. One approach would be to randomly assign a small

proportion of each cultural subgroup studied to a condition in which they are asked to sign a

consent form. The results of this condition could then be compared with the matched nonsigning group with respect to refusals, and perhaps also with respect to the quality (detail) of

responses and the distribution of crime victimization events reported. 

The NCVS might be exempt from signed consent under the Common Rule. While some of

the questions may be sensitive insofar as asking respondents to recall victimization, they do

not involve more than minimal risk except for a very few cases where there may be risk of

some emotional upset. 
Protection of Human Subjects in Large Surveys 61

11. Researching ethical questions

This report was written to provide specific answers to pertinent ethical questions, and to

provide an overview of the many highly complex ethical questions to which the answer is “It

depends....” Typically, the tough ethical questions pit two competing kinds of good against

one another, and usually each kind of good brings with it competing bad side-effects. For

example, should the informed consent be so comprehensive that it answers every question

any participant might have, or would this be so long and tedious a document that

respondents would tune out and be less well informed? Would comprehensiveness destroy

or deter comprehension? 

The research organization and its IRB quickly learn that each ethical dilemma is a bit

different because research contexts, resources, and scientific, social, and regulatory

environments differ. Most ethical and regulatory questions are resolved through reasoned

discussion by the researchers and IRB, who examine the pros and cons of alternative

approaches in detail. The decision makers seek the solution that seems — to them — to

best fit the situation. The IRB may weigh ethical and regulatory decision criteria above

scientific and practical criteria, while the researchers may rank these decision criteria

otherwise and may persuade the IRB to place more weight on certain scientific and practical

considerations. In accord with regulatory requirements, the IRB summarizes in its minutes

the discussion, its reasoning, and the grounding of that reasoning in the regulations and the

Belmont principles (beneficence, respect, and justice), and finally its conclusion. At this

point, the decision of the IRB is in compliance with the Common Rule, and the researchers

must comply with the decision.

There are dangers to some of the assumptions that IRBs and researchers may bring to their

reasoned discussions as the following examples illustrate. During the last 25 years many

social and behavioral scientists have expressed certainty that requirements of informed

consent would destroy their ability to conduct valid research, but most of these views have

proven fallacious. Similarly, many IRBs have insisted on individual, and even signed,

informed consent of subjects in cultures such as Native American tribes, where decisions

are made at a tribal, not individual, level, and where signing documents is regarded as

insulting or dangerous. For examples of cultures that do not regard autonomy of the

individual or signed consent as acceptable, see Marshall (1992) and Wax (2000). IRBs are

required to have at least one community member who might be better able to speak for at

least one other culture than can the rest of the IRB, for example, a community member who

is an experienced school teacher can speak for the culture of the local schools. Some

researchers are quite familiar with the cultures they study. However there are many

instances in which IRBs and researchers do not know enough about what is “out there” to

make sound ethical decisions.
Protection of Human Subjects in Large Surveys 62

Although ethics is a normative discipline, the ethics of survey research raises many

questions that are empirical and methodological. Ethics requires that researchers obtain

children’s informed assent to participate; but does not tell us what kinds of information

children can understand or what kinds of decisions they are competent to make at a given

age. Ethics requires that researchers respect confidentiality of information obtained from

respondents, but does not tell us whether respondents believe promises of confidentiality or

whether such promises make a difference in their willingness to participate candidly. As this

literature search reveals, major survey research organizations — Survey Research Center of

the Institute for Social Research, University of Michigan; National Opinion Research Center,

University of Chicago; the U.S. Census Bureau — carry out continuous programs of

research on ways to improve their research methods. Many of these programs are

stimulated by changes in the ethical or regulatory environment of social research. 

In their continuing quest to improve ethical and methodological aspects of the NCVS, BJS

and Census will undoubtedly face many empirical questions, some of which were raised in

this report. Is the NCVS designed to evoke the most accurate responses from young

teenagers or would a somewhat different version work better? Does signed informed

consent affect willingness to participate or to answer sensitive questions? 

Survey researchers can use several approaches to answer empirical questions. Some

useful approaches are: the experiment within a study or as a pilot test prior to a study, the

focus group to explore reactions of respondents to aspects of the intended survey and to

generate new hypotheses to be tested, the ethnographic study of one’s research

populations, and the study of meta-communication within the research process. A brief

outline of these approaches follows.

The experiment within a study

Researchers can add one or more experimental conditions to some aspect of the study, and

examine the effects of the variations in relation to one or more dependent variables. Here

are a few examples:

The experimental conditions may be integral to the survey, such as the effects of anonymity

or various kinds of confidentiality. Investigators might try different wordings of sensitive

questions and different ways to jog subjects’ memories. Researchers might perform these

experiments in pilot tests or build them into the main study.

Sometimes such experiments are not intended to yield generalizable knowledge about

survey research, but rather to provide information about the particular research issue. An

example of such an experiment follows. Sieber and Saks (1989) mailed a survey to all U.S.
Protection of Human Subjects in Large Surveys 63

and Canadian psychology departments that asked, essentially, whether departmental

subject pool practices were in keeping with psychologists’ code of research ethics and with

the federal regulations of human research. Half of the respondents were asked to indicate

the name of their university. Was the response rate or the admission of unethical or illegal

practices equal for the two groups? Can either group be trusted to tell the truth? Clearly,

anonymity had an impact, but not in the way expected. Response rate was unaffected, and

there were only slightly more admissions of dubious practices by anonymous respondents. 

However all admissions by identified departments were accompanied by extensive

rationales justifying their behavior. The profile of kinds of ethical improprieties was similar

for the two groups. The survey had a 90% response rate. The results of the survey and the

experiment within it indicated that departments were mindful of the ethical implications of

their policies, sensitive or defensive about their breaches of ethical conduct, but basically

honest in their responses to the survey. This is an example of an experimental result that

probably could not be meaningfully generalized to other contexts but that provided additional

information about both the ethical sensitivities of the respondents and the validity of their

responses.

The experimental manipulation might precede the research itself, such as the mode in which

researchers recruit subjects (for example letter, phone, or e-mail) the amount or kind of

incentive researchers offer for participation, or the way researchers provide informed

consent (for example individual verbal discussion, group discussion, pamphlet, videotape, or

computer-assisted instruction). One prevalent idea that has not been reported yet in the

literature is to present informed consent information via computer-assisted instruction when

the research involves risks that are not easily understood. The subject would be tested, via

the computer, on the information that the interviewer has presented, and not allowed to

proceed until able to correctly answer questions about the informed consent process. The

program then asks whether the respondent consents to participate. Researchers would

electronically document the entire procedure for each subject. Dependent variables might

include: willingness to participate, willingness and candor to respond to individual questions,

satisfaction with the experience of participating, and how much the subject knows about the

study right after participating.

The experimental manipulation might be in the technology of the survey itself. The survey

may be administered in a face-to-face interview, web-based Internet survey, or computerassisted self-interview. The experimental manipulation might be the systematic variation of

respondent-researcher characteristics. For example, does it matter whether the interviewer

is of the same gender, ethnicity, or age bracket as the respondent?

The focus group

The focus group is a form of qualitative research that is best suited for generating, as

opposed to testing, hypotheses, and for exploring people’s reactions to questions that are
Protection of Human Subjects in Large Surveys 64

somewhat new to them and for which they do not have ready, thought-out answers. David

Morgan (1988) suggests the following uses of focus groups:

• To orient oneself to a new field of study,

• To generate hypotheses based on informants’ insights,

• To evaluate different research sites or study populations,

• To develop interview schedules and questionnaires, and

• To get participants’ interpretations of results.

Researchers can ask a properly organized focus group of about 5 to 12 persons the kinds of

questions that people could not or would not answer in a survey or questionnaire, but that

would evoke extensive lively discussion in a focus group. There are no right answers to

focus group questions. The participants are the experts; their role is to tell the researcher

such things as how they feel about a certain issue, what they need or want, or what

approach to some activity they would find preferable or believe would work.

For example, sociologist Benjamin Bowser (Bowser and Sieber, 1993) sought to find out

what crack cocaine-using inner-city teenagers know about HIV infection and safe sex, and

what kinds of sexual practices they engage in. He hung out in an inner-city neighborhood,

got to know street kids, and invited them to focus groups over pizza. He told them what he

needed to know to help kids help themselves, and asked their advice on how to go about

surveying kids who frequent crack houses. Their advice led him to develop an innovative

and successful survey research approach and to achieve major survey research findings on

the risk behavior of this population.

Although the researcher has specific questions in mind for the group to answer, it is often

unnecessary to ask more than the first question. As the group takes on a life of its own, it

may raise and answer all of the researcher’s unasked questions and provide powerful

unexpected insights along the way. It is important that the researcher have goals in mind so

that the group can be kept somewhat on the subject; but it is equally important that the

researcher be flexible enough to permit unexpected but highly valuable new ideas to

emerge. At the conclusion of the focus group, which often could go on much longer than the

leader permits, the participants each have much clearer ideas about the topic, ideas which

they are able and willing to articulate. It is a common practice to give individual respondents

a questionnaire after the focus group so that they can give their individual responses to 

questions in a short answer or Likert Scale format.

Focus groups can be operated very inexpensively and simply. Commercial marketing firms

may charge many thousands of dollars for one or more focus groups that involve one-way
Protection of Human Subjects in Large Surveys 65

mirrors, videotaping, and hours of transcribing. However most researchers find that an

effective approach is to involve a discussion leader and two assistants who sit nearby and

take notes on the main ideas that are raised. Near the end of the focus group the assistants

may summarize their notes to the participants to ask if there are ideas they want to add or if

the note-takers got it right. An outstanding source of information on conducting focus groups

is Krueger (1994 or a later edition). A brief discussion of how to use and conduct a focus

group is found in appendix B of this paper.

Ethnography

Issues of respect for research participants, informed consent, risk/benefit assessment,

privacy and confidentiality, and respondents’ willingness to participate candidly and to

answer sensitive questions take on a different character when surveying members of

deviant or marginalized populations. Obviously each deviant population is different and

requires a different ethnographic approach. 

Some populations of interest to researchers conducting surveys on crime victimization are

persons whose unconventional, transitory, or lower-status lifestyle make them highly likely

candidates for crime victimization. These populations include groups of homeless people,

unassimilated immigrants (legal and otherwise), prostitutes, households of drug dealers, and

enclaves of young gay men who have migrated to cities where their lifestyle may be more

acceptable. If researchers wish to interview members of such groups, they must know

where, when, and how to do so; above all, they must know how to establish enough trust to

create a viable relationship and obtain candid answers. 

Researchers can use the knowledge of urban anthropologists and other professionals who

have worked with the population they seek to study to prepare their survey. However this

neither establishes the legitimacy of the researcher to ask for sensitive information nor gives

the researcher the level of comfort needed to work in the environment of their respondents. 

It is well known that the personal characteristics of a participant observer affect his or her

research practice (e.g., see Wax, 1979). Researchers may find it necessary to match

backgrounds of interviewer and target population, including matching ethnicity, gender, or

language. For example, a female doctoral student who had once been homeless conducted

highly useful research and AIDS outreach with homeless women who used injection-drugs

in San Francisco. She socialized with members of her target population for a few weeks,

after which she rented a “flop house” and put on dinners for the people she wished to

survey. She knew how to organize her interaction with them so that they could avoid police

hassles. She respected them and conversed with them in a familiar way, and they knew and

trusted her. Moreover, she was close enough to them and their lifestyles that she could

evaluate their responses for candor, and interpret responses that would not be interpretable

by persons unacquainted with this culture and setting.
Protection of Human Subjects in Large Surveys 66

Meta-communication in the research process

It is well documented by those who perform empirical research on the process of survey

research that there are considerable individual differences among trained interviewers in the

results they achieve. An interesting example is found in the work of Singer and Frankel

(1982) who studied informed consent procedures in telephone interviews. Two aspects of

informed consent were varied: information about the content of the interview and information

about its purpose. There was a brief and a more detailed and honest version of each. 

Singer and Frankel found that these factors made little difference in the quality of the data

collected and the meaning of the experience for the respondents. By far the largest

variation in response rate to the survey occurred among interviewers. The more

experienced interviewers produced a higher response rate using the brief consent

procedures that they were used to, while the less experienced interviewers produced a

higher response rate using the more lengthy experimental procedure. 

To date there is very little understanding of what factors enter into the success of welltrained interviewers. However it is obvious that there is considerable meta-communication

that occurs between researcher and subject. Researchers know that tone of voice, body

language, mirroring and congruence with the respondent, physical characteristics, room

arrangement, and distance between persons make a difference in some situations (Sieber,

1996). The question is whether researchers need to be concerned with any of these

differences to conduct survey research effectively and efficiently.
Protection of Human Subjects in Large Surveys 67

12. Keeping abreast of new developments and answering questions

A growing variety of informational resources on the ethics and regulation of human research

attest to the need for researchers to keep abreast of new and old issues and to learn from

others. The following resources are useful to researchers and IRBs.

On-line resources

Relative to other areas of human research, researchers regard survey research as relatively

risk free, and anonymous surveys that do not ask sensitive questions are exempt from IRB

review. Consequently there are as yet no on-line tutorials concerned with ethics and

regulations of survey research. In fact there are no tutorials dedicated to social and

behavioral research; there are only tutorials for biomedical research. However there is

indication that Office of Human Research Protections (OHRP), Department of Health and

Human Services, which provides guidance on Common Rule questions, has plans to offer

within the year an on-line tutorial concerned with social and behavioral research.

There are other ways in which survey researchers can find answers to their questions online. Members of any IRB that is instituted in connection with the NCVS should join the online discussion group entitled McWirb (http://www.mcwirb.org). Members may post

questions, share information, and learn how other IRBs in the United States and Canada

handle issues.

Meetings

Two kinds of professional organizations regularly hold meetings that deal with ethical issues

in research.

The primary organization is Public Responsibility in Medicine & Research

(http://www.primr.org), which holds annual meetings in Boston in December and in San

Diego in October. It holds other meetings at irregular intervals. It is located at 132 Boylston

Street, Boston, MA 02116; phone 617-423-4112, FAX 617-423-1185.

The other professional organizations are scientific societies, such as the American

Association for the Advancement of Science (http://www.aaas.org), American Sociological

Association (http://www.asanet.org), and the American Psychological Association

(http://www.apa.org). Their examination of ethical issues usually occurs at their annual

scientific meetings, and is far less intense or focused than are the sessions at PRIM&R. 
Protection of Human Subjects in Large Surveys 68

Journals

There are two journals devoted largely to ethical issues in human research that carry articles

of concern to survey researchers. 

Ethics & Behavior is edited by Dr. Gerald Koocher, Department of Psychiatry, Children’s

Hospital, 300 Longwood Avenue, Boston, MA 02115 (http://www.erlbaum.com/Journals). 

IRB: Ethics and Human Research is edited by Betty Criger, and published by the Hastings

Institute. It is of particular interest to IRB members, research administrators, and

investigators in the biomedical and behavioral/social sciences. It is published by the

Hastings Center at Garrison, New York 10524, phone 845-424-4040, fax 845-424-4545, or

see the journal index at http://www.thehastingscenter.org/publications.

Two other journals that may be of tangential interest to BJS are Scientific & Engineering

Ethics, edited by Stephanie J. Bird and Raymond Spier, http://www.opragen.co.uk, and

Accountability in Research, edited by Dr. Adil E. Shamoo,

http://www.gbhap.com/journals/149. These journals rarely publish articles of interest to

survey researchers.

Informal local groups

NCVS researchers concerned with ethical issues may have more interests/issues in

common with other government agencies that conduct survey research than with

researchers engaged in other kinds of survey research. It may prove worthwhile to develop

a consortium of government agency IRB chairs, administrators, researchers, and other

interested members to discuss and exchange ideas and information.

Office of Human Research Protections

The Office of Human Research Protections (OHRP), Department of Health and Human

Services, can provide useful guidance. OHRP is at http://ohrp.osophs.dhhs.gov/. 

OHRP’s phone number is 301-496-7005. 

A useful document is the OHRP publication Protecting Human Subjects: Institutional Review

Board Guidebook, which is available from OHRP and on-line at

http://ohrp.osophs.dhhs.gov/irb/irb_preface.htm.
Protection of Human Subjects in Large Surveys 69

13. Briefly annotated bibliography of literature cited

American Psychological Association, Ethical Principles of Psychologists and Code of

Conduct (Washington, D.C.: APA, 1992).

While most of this code of ethics pertains to clinical practice and other non-research

activities, Sections 6.06 to 6.26 concern research and are heavily relied upon not only by

psychologists but by other organizations concerned with ethics and regulations of human

research.

A. W. Austin and R. F. Boruch, “A ‘Link File System’ for Assuring Confidentiality of Research

Data in Longitudinal Studies,” American Educational Research Journal 7, 615-624 (1970).

This article describes highly sophisticated techniques for linking files without the possibility of

discovery of individual identities.

P. J. Barker and R. F. Cooper, “Do Sexual Health Questions Alter the Public’s Response to

Lifestyle Questionnaires?” Journal of Epidemiology and Community Health 50, 688 (1996).

The finding that just one sensitive question did not affect response rate leaves one to

wonder what is the threshold for making a survey too sensitive, and hence for affecting

response rate.

David M. Bersoff and Donald M. Bersoff, “Ethical Issues in the Collection of Self-Report

Data,” in A. A. Stone, J. S. Turkkan, C. A. Bachrach, J. B. Jobe, H. S. Kurtzman, and V. S.

Cain, eds., The Science of Self-Report: Implications for Research and Practice (Mahwah,

N.J.: Lawrence Erlbaum Associates, 2000), pp. 9-24.

The risks connected with self-report surveys are discussed, pointing out that surveys can

ask for far more personal information than is available by observation or experiment. An

anonymous survey, requiring no IRB review or informed consent, may deeply invade privacy

and cause much emotional upset by probing into painful experiences.

O. Boikess, Privacy Protection for Research Subjects: Certificates of Confidentiality,

personal communication, 2000.

This communication sets forth details of a legal case, heard in the Supreme Court of New

York, in which the power of the Certificate of Confidentiality was tested and upheld.

R. F. Boruch and J. S. Cecil, Assuring the Confidentiality of Social Research Data

(Philadelphia: University of Pennsylvania Press, 1979).

This book, now out of print, might be regarded as the most important publication on
Protection of Human Subjects in Large Surveys 70

approaches to assuring the confidentiality of social research data. It catalogs and describes

the many kinds of approaches to assuring confidentiality, such as procedural, statistical, and

legal. Though a few parts of it would be rewritten in light of new information, it remains a

seminal work.

B. P. Bowser and J. E. Sieber, “AIDS Prevention Research: Old Problems and New

Solutions,” in C. M. Renzetti and R. M. Lee, eds., Researching Sensitive Topics (Newbury

Park: Sage, 1993), pp. 160-176.

The challenge of AIDS prevention calls for new combinations of research tools that enable

social scientists to understand why a particular intervention succeeds or fails. This chapter

describes a series of approaches, including the use of focus groups, to reconceptualize

AIDS prevention research and to improve methods and theory in this area.

D. T. Campbell, R. F. Boruch, R. D. Schwartz, and J. Steinberg, “Confidentiality-Preserving

Modes of Access to Files and to Interfile Exchange for Useful Statistical Analysis,”

Evaluation Quarterly 1, 269-300 (1977).

The authors present many techniques that enable useful data sharing and secondary

analysis without jeopardizing confidentiality of data.

A. H. Church, “Estimating the Effects of Incentives on Mail Survey Response Rates: A Meta

Analysis,” Public Opinion Quarterly 57, 62-79 (1993).

This is a useful empirical study of the effects of financial incentives on willingness to

participate in survey research.

R. B. Cialdini, Influence: The Psychology of Persuasion (New York: Morrow, 1993).

This important book helps us to better understand subtle forces of persuasion that are at

work in survey research and other contexts.

J. E. Corbin, “Child Abuse and Neglect: The Cultural Context,” in R. E. Helfer and R. S.

Kempe, eds., The Battered Child (Chicago: University of Chicago Press, 4th ed., 1987), pp.

239-255.

The authors discuss a wide range of definitions of child abuse and neglect, and show that

the incidence of abuse and neglect vary widely depending on definitions.

W. W. Darrow, H. W. Jaffe, P. A. Thomas, H. W. Haverkos, M. F. Rogers, M. E. Guinan, D.

M. Auerbach, T. J. Spria, and J. W. Curran, “Sex of Interviewer, Place of Interview, and

Responses of Homosexual Men to Sensitive Questions,” Archives of Sexual Behavior 15,
Protection of Human Subjects in Large Surveys 71

79-88 (1986).

Their examination of a variety of physician-patient interviews revealed virtually no

differences as a result of gender of interviewer and location of interview.

C. B. Fisher and S. A. Wallace, “Through the Community Looking Glass: Reevaluating the

Ethical and Policy Implications of Research on Adolescent Risk and Psychopathology,”

Ethics & Behavior 10, 99-118 (2000).

This article, based on community focus groups, urges investigators to seek the perspectives

of teenagers and parents in evaluating the personal and political costs and benefits of

research on adolescent risk behaviors.

J. L. Freedman and S. C. Fraser, “Compliance Without Pressure: The Foot-in-the-door

Technique,” Journal of Personality and Social Psychology 4, 195-202 (1966).

This seminal study of the way in which persons could be gotten to accede to unreasonable

requests has triggered a variety of studies that have informed survey researchers about

ways to approach sensitive topics.

E. Gil, The California Child Abuse Reporting Law: Issues and Answers for Professionals

(Publication No. 132 [10/86]), 1982. Available from the State of California Department of

Social Services, Office of Child Abuse Prevention, 744 P Street, M.S. 9-100. Sacramento,

CA 95815.

This document provides many useful tips to the professional who is subject to mandatory

reporting of child abuse in California. Gil's recommended wording to warn respondents that

confidentiality of survey or interview data is not absolute is of particular interest.

J. Gilbert, Protecting Confidential Research Information from Disclosure in Litigation, 

personal communication, Federal Judicial Center Memo, July 7, 2000.

In this memo, legal intern Gilbert sets forth the legal limits of protection to subpoenaed data;

of particular interest is his discussion of the methods of legal discovery that can be used to

obtain data that have been sent outside of the country.

E. Gray and J. Cosgrove, “Ethnocentric Perceptions of Childrearing Practices in Protective

Services,” Child Abuse and Neglect 9, 389-396 (1985).

Adding to the difficulty of defining child abuse is the prevalence of major differences among

ethnic groups in punitiveness of childrearing practices.
Protection of Human Subjects in Large Surveys 72

T. P. Johnson and R. W. Moore, “Gender Interactions Between Interviewer and Survey

Respondents: Issues of Pornography and Community Standards,” Sex Roles 28, 5-6 (1993).

The authors did not find a gender effect in a study of responses to a phone survey on use of

pornographic materials.

S. C. Kalichman, Mandated Reporting of Suspected Child Abuse: Ethics, Law and Policy

(Washington, D.C.: APA, 1999).

Every State requires that human services professionals report suspected child abuse. 

Kalichman offers an innovative model for making the reporting decision.

M. Kim, “Poor Women Survey Poor Women: Feminist Perspectives in Survey Research,”

Feminist Economics 3, 99-117 (1997).

This article describes a highly qualitative and collaborative approach to telephone surveys of

participants in job training programs. The use of poor women to interview poor women was

highly effective in creating rapport, reducing interviewer bias, and facilitating the answering

of sensitive questions.

A. Kinsey, W. B. Pomeroy, C. E. Martin, and P. H. Gebhard, Sexual Behavior in the Human

Female (Philadelphia: Saunders, 1953).

Kinsey and his associates pioneered the development of survey techniques that enabled

them to elicit candid answers to highly sensitive questions.

P. Kissinger, J. Rice, T. Farley, S. Trim, K. Jewitt, V. Mangavio, and D. H. Martin,

“Application of Computer-Assisted Interviews to Sexual Behavior Research,” American

Journal of Epidemiology 149, 950-954 (1999).

The authors describe video-enhanced computer-assisted, self-administered interviews,

which were shown to elicit more social undesirable responses than face-to-face interviews.

R. A. Krueger, Focus Groups: A Practical Guide for Applied Research (Newbury Park: Sage,

2nd ed., 1994).

This handy guide and other works by Krueger have good advice for researchers who want to

conduct focus groups.

J. A. Landsheer, P. G. van der Heijden, and G. van Gils, “Trust and Understanding, Two

Psychological Aspects of Randomized Response,” Quality and Quantity 33, 1-12 (1999).

This research established the importance of trust and understanding of the method in

producing valid responses on socially undesirable topics.
Protection of Human Subjects in Large Surveys 73

R. S. Laufer and M. Wolfe, “Privacy as a Concept and a Social Issue: A Multidimensional

Developmental Theory,” Journal of Social Issues 33, 44-87 (1977).

Laufer and Wolfe’s theory of personal privacy recognizes the manifold cultural,

developmental, and situational elements by which individuals orchestrate their privacy.

J. T. Lesser and J. M. O’Reilly, “Mode of Interview and Reporting of Sensitive Issues: Design

and Implementation of Audio Computer-assisted Self-interviewing,” NIDA Research

Monograph 167, 366-382 (1997).

The authors review various approaches to interviewing people about sensitive issues. They

include the implementation and results of using audio-computer-assisted self-interviewing.

E. K. Levine, “Old People Are Not All Alike: Social Class, Ethnicity/Race, and Sex Are Bases

for Important Differences,” in J. E. Sieber, ed., The Ethics of Social Research: Surveys and

Experiments (New York: Springer Verlag, 1982), pp. 127-144.

This account traces the history of avoiding research on the elderly, particularly elderly

women, details the kinds of issues that are not raised in research publications, and shows

how many incorrect assumptions about elderly persons have arisen out of poor sampling

and assumptions of homogeneity of this population.

M. Levine and A. Levine, Helping Children: A Social History (New York: Oxford University

Press, 1983).

A history of the development of child welfare reporting laws is presented.

L. E. Linden and D. J. Weiss, “An Empirical Assessment of the Random Response Method

of Sensitive Data Collection,” Journal of Social Behavior and Personality 9, 823-836 (1994).

The authors studied sensitive aspects of personal history in 285 undergraduates using

written questionnaires. They found no difference between direct and randomized response

methods of questioning.

P. A. Marshall, “Research Ethics in Applied Anthropology,” IRB: A Review of Human

Subjects Research 14, November-December, pp. 1-5 (1992).

Various problems arise when researchers apply culturally insensitive approaches to nonWestern or non-mainstream cultures, and when researchers apply federal regulations

designed for mainstream American culture elsewhere. This article describes the resulting

dilemmas.
Protection of Human Subjects in Large Surveys 74

T. Makkai and I. McAllister, “Measuring Social Indicators in Opinion Surveys: A Method to

Improve Accuracy on Sensitive Questions,” Social Indicators Research 27, 169-186 (1992).

The authors compare sealed booklet technique with the face-to-face interview in terms of

respondent’s willingness to answer sensitive questions.

G. B. Melton, “Respecting Boundaries: Minors, Privacy and Behavioral Research,” in B.

Stanley and J. Sieber, eds., The Ethics of Research on Children and Adolescents (Newbury

Park: Sage, 1992), pp. 65-87.

The problems of protecting privacy and assuring confidentiality of behavioral research on

minors are discussed. The stages of development of minor's sense of privacy are illustrated. 

Melton discusses uses and limits of Certificates of Confidentiality.

G. B. Melton, R. J. Levine, G. P. Koocher, R. Rosenthal, and W. Thompson, “Community

Consultation in Socially Sensitive Research: Lessons from Clinical Trials on Treatments for

AIDS,” American Psychologist 43, 573-581 (1988).

This classic article describes the process and benefits of consultation between members of

vulnerable communities and researchers whose intentions are regarded with suspicion,

anger, and plans for non-cooperation by those they seek to study.

National Commission for the Protection of Human Subjects of Biomedical and Behavioral

Research, The Belmont Report (Washington, D.C.: National Commission for the Protection

of Human Subjects of Biomedical and Behavioral Research, 1979).

The Belmont Report sets forth the ethical principles upon which the Federal Regulations of

Human Subjects are based.

M. T. Orne, “On the Social Psychology of the Psychological Experiment: With Particular

Reference to Demand Characteristics and Their Implications,” American Psychologist 17,

776-783 (1962).

This classical essay provided an important foundation for subsequent evaluation of the

demand characteristics of various social science research activities.

P. Raghubir and G. Menon, “Asking Sensitive Questions: The Effects of Type of Referent

and Frequency Wording in Counter-biasing Methods,” Psychology & Marketing 13, 633-652

(1996).

The authors conducted two experiments that tested the effects of counter-biasing methods

on respondent’s willingness to admit to stigmatized behaviors.
Protection of Human Subjects in Large Surveys 75

G. A. Sachs and C. K. Cassel, “Biomedical Research Involving Older Human Subjects,”

Law, Medicine and Health Care 18, 234-243 (1990).

This excellent article outlines special issues arising in research on the elderly, and kinds of

safeguards and best practices advisable with older populations.

J. E. Sieber, ed., Sharing Social Science Data: Advantages and Challenges (Newbury Park:

Sage, 1991).

This edited volume discusses a range of data sharing arrangements and the attendant

challenges of protecting identities and providing adequate documentation. It includes

descriptions of a variety of innovative sharing relationships.

J. E. Sieber, “Typically Unexamined Communication Processes in Research,” in B. H.

Stanley, J. E. Sieber, and G. B. Melton, eds. Research Ethics: A Psychological Approach

(Lincoln: University of Nebraska Press, 1996).

This article specifies a range of meta-communication processes that occur in research and

that may be deserving of research in relation to ethical and methodological questions.

J. E. Sieber and M. Saks, “A Census of Subject Pool Characteristics and Policies,” American

Psychologist 44, 1051-1063 (1989).

This is an illustration of an experiment within a survey that examined the effects of anonymity

on response rate and frequency of acknowledging unethical or illegal practices.

E. Singer, “Informed Consent: Consequences for Response Rate and Response Quality in

Social Surveys,” American Sociological Review 43, 144-162 (1978). 

The author investigated the effects in face-to-face interviews of more versus less information

about sensitive subject matter, of varied assurances of confidentiality, and of requiring or not

requiring a signature to document consent. Varying information made no difference, but was

noticed if it failed to mention pertinent elements of the study. Subjects were inaccurate in

their perceptions of how much confidentiality they had been promised. However perception

that one had been given absolute assurance of confidentiality was associated with higher

estimates of sensitive behavior. Subjects assigned to a condition in which they were asked

to sign a consent form significantly more often refused to do so but were willing to participate

in the interview if they didn’t have to sign the consent form.

E. Singer, “Informed Consent in Surveys: A Review of the Empirical Literature, “Journal of

Official Statistics, 9, 361-375, (1993).

This paper examines the effects of four elements of consent: the content of the interview and

purpose of the research, assurances of confidentiality or anonymity; active versus passive
Protection of Human Subjects in Large Surveys 76

consent, and voluntariness of participation. Of particular interest was the finding that

confidentiality promises have a small effect on willingness to participate in survey research. 

Highly detailed promises are counterproductive when the research questions are not

sensitive; presumably such detail raises unwarranted concerns and suspicions.

E. Singer and M. R. Frankel, “Informed Consent Procedures in Telephone Interviews,”

American Sociological Review 47, June, pp. 416-427 (1982).

This paper reports an experiment with providing varying amounts of information on the

content and purpose of the survey in the informed consent. Interestingly, the experimental

variables had little impact on the willingness of respondents to be interviewed and the quality

of the interview. However large variations in response rate occurred among interviewers,

with experienced interviewers doing best with the short consent statement and the

inexperienced ones doing best with the long statement.

E. Singer, R. M. Groves, and A. D. Corning, “Differential Incentives: Beliefs about Practices,

Perceptions of Equity, and Effects on Survey Participation,” Public Opinion Quarterly 53,

251-260 (1999).

This study found that use of incentives to convert refusals is perceived as inequitable but

that this does not effect the response rate of cooperative subjects who know about this

practice.

E. Singer, H. Hippler, and N. Schwarz, “Confidentiality Assurances in Surveys: Reassurance

or Threat?” International Journal of Public Opinion Research 4, 256-268 (1992).

When non-threatening questions are accompanied by elaborate assurances of

confidentiality, response rate is lowered.

E. Singer, N. Mathiowetz, and M. P. Couper, “The Impact of Privacy and Confidentiality

Concerns on Survey Participation: The Case of the 1990 U.S. Census,” Public Opinion

Quarterly 57, 465-482 (1993).

The impact of privacy and confidentiality concerns are only slightly related to survey

response.

E. Singer, D. vonThurn, and E. Miller, “Confidentiality Assurances and Response: A

Quantitative Review of the Experimental Literature,” Public Opinion Quarterly 59, 66-77

(1995).

Meta-analysis of 30 studies of the effect of confidentiality assurances (verbal assurances,

anonymity, or use of randomized response method) showed that assurances of all three

kinds are positively associated with response rate and response quality, but only when

sensitive questions are asked.
Protection of Human Subjects in Large Surveys 77

E. Singer, N. Gebler, J. Van Hoewyk, T. Raghunathan, and K. McGonagle, “The Effects of

Incentives on Response Rates in Face-to-Face and Telephone Surveys,” Journal of Official

Statistics 15, 217-230, (1999).

This experiment investigated the effects of various kinds of incentives on response rate in

face-to-face and phone surveys.

T. W. Smith, “The Impact of the Presence of Others on a Respondent’s Answers to

Questions,” International Journal of Public Opinion Research 9, 33-47 (1997).

This study examines the effects of the presence of spouses and children during interviews to

determine whether different responses are evoked under these conditions.

A. L. Stanton, E. J. Burker, and D. Kershaw, “Effects of Researcher Follow-up of Distressed

Subjects: Tradeoff Between Validity and Ethical Responsibility?,” Ethics & Behavior 1, 105-

112 (1991).

This excellent experiment provides strong evidence for the value of providing respondents

with useful information and referrals, and for the importance of not seeking to intervene with

help that was not requested.

S. Sudman and N. M. Bradburn, Asking Questions. (San Francisco: Jossey-Bass, 1982).

This is a highly practical and useful introductory treatise on formulating and asking questions

of various types in survey research.

R. Thompson, “Developmental Changes in Research Risk and Benefit: A Changing

Calculus of Concerns,” in B. Stanley and J. Sieber, eds., Social Research on Children and

Adolescents: Ethical Issues (Newbury Park: Sage, 1982), pp. 31-64.

In contrast to the usual view that minors become less vulnerable as they grow older, this

chapter presents a description of kinds of vulnerabilities that arise through the

developmental sequence from early childhood to adulthood, showing that there are forms of

vulnerability that increase with age through adolescence.

R. Tourangeau and T. W. Smith, “Asking Sensitive Questions: The Impact of Data

Collection, Mode of Question Format, and Question Context,” Public Opinion Quarterly 80,

275-304 (1996).

This complex study examined the effects of three kinds of computer-assisted interviewing,

open- versus closed-ended answer options, and contextual variables.
Protection of Human Subjects in Large Surveys 78

A. D. Trice, “Informed Consent. VII. Biasing of Sensitive Self-report Data by Both Consent

and Information,” Journal of Social Behavior and Personality 2, 369-374 (1987).

The author found that a significant number of subjects refused to participate if required to

sign a consent form but were willing to participate otherwise.

A. G. Turner, “What Subjects of Survey Research Believe about Confidentiality,” in J. E.

Sieber, ed., The Ethics of Social Research: Surveys and Experiments (New York: Springer

Verlag, 1982).

Turner summarizes a series of high-level studies of what American populations, especially

minority populations, believe about survey research. Many see surveys as pointless since

they believe the government already knows everything about them. They do not trust

promises of confidentiality. When individuals find themselves in a position where they

cannot refuse to participate, they may be very careful to say only those things that they

believe will not come back to haunt them, and are careful to tell each survey taker the same

story.

U. N. Umesh and R. A. Peterson, “A Critical Evaluation of the Randomized Response

Method: Applications, Validation, and Research Agenda,” Sociological Methods & Research

20, 104-118 (1991).

This article reviews recent applications of the randomized response method, identifies new

issues being studied, and suggests future research.

P. G. van der Heijden, G. van Gils, J. Bouts, and J. J. Hox, “A Comparison of Randomized

Response, Computer-assisted Self Interview, and Face-to-Face Direct Questioning: Eliciting

Sensitive Information in the Context of Welfare and Unemployment Benefit,” Sociological

Methods & Research 28, 505-537 (2000).

This is one of the few validation studies conducted in which the respondents and

interviewers did not know that the researchers knew about their welfare fraud. Respondents

in the randomized response condition admitted more acts of fraud than either the face-toface interviewed respondents or the computer-assisted self-interviewed respondents.

M. L. Wax, “Gender and Age in Fieldwork and Fieldwork Education,” Social Problems 26,

509-522 (1979).

Characteristics of the ethnographer influence the talents he or she brings to the work, the

interaction likely to occur in the field, and the way members of the community perceive the

ethnographer.
Protection of Human Subjects in Large Surveys 79

M. L. Wax, Testimony before the National Bioethics Advisory Commission on Problems

raised by the Federal Regulations for Research in Cultural Anthropology, Washington, D.C.,

April 6, 2000.

J. G. Weis, “Family Violence Research Methodology and Design,” in L. Ohlin and M. Tonry,

eds., Family Violence (Chicago: University of Chicago Press, 1989), pp. 296-321.

This provides a comprehensive perspective on the incidence of child abuse and the

dependence of reported incidence on definitional and research criteria.

G. B. Willis, “The Use of the Psychological Laboratory to Study Sensitive Survey Topics,”

NIDA Research Monograph 167, 416-438 (1997).

The author describes various cognitive techniques for studying approaches to asking

sensitive questions in ways that produce truthful answers, and offers recommendations for

improving survey design.
Protection of Human Subjects in Large Surveys 80

Appendix A. State phone numbers for reporting child maltreatment

Childhelp USA is a non-profit organization dedicated

to the prevention and treatment of child abuse. It

assists States in establishing guidelines to make their

own laws to protect abused and neglected children. It

has no authority to intervene in individual child abuse

and neglect cases. 

Many States have a toll-free number to call to report

suspected abuse. States with toll-free child abuse

reporting numbers are listed. The reporting party and

the child who is allegedly being abused must reside

in the same State for the following reporting numbers

to be valid. When the reporting party resides in a

different State than the child, or for States not listed,

call Childhelp's National Child Abuse Hotline at 1-

800-422-4453 or visit Childhelp’s website at

http://www.childhelpusa.org. Childhelp is not

involved in investigations by a government agency. 

Hotline counselors provide the State or county

reporting number to callers or provide other referrals. 

This document is current as of September 12, 2000.

Arizona 

(800) 330-1822 

Arkansas 

(800) 482-5964 

Connecticut 

(800) 842-2288 

Delaware 

(800) 292-9582 

Florida 

(800) 962-2873 

Illinois 

(800) 252-2873 

Indiana

(800) 562-2407 

Iowa 

(800) 362-2178 

Kansas

(800) 922-5330

Kentucky

(800) 752-6200 

Maine

(800) 452-1999 

Massachusetts

(800) 792-5200 

Michigan

(800) 942-4357 

Mississippi

(800) 222-8000 

Missouri

(800) 392-3738 

Montana

(800) 332-6100 

Nebraska 

(800) 652-1999 

Nevada 

(800) 992-5757 

New Hampshire 

(800) 894-5533 

 New Jersey 

(800) 792-8610 

New Mexico 

(800) 432-2075 

New York 

(800) 342-3720 

North Carolina

(800) 662-7030 

Oklahoma 

(800) 522-3511 

Oregon 

(800) 854-3508 

Pennsylvania 

(800) 932-0313 

Rhode Island 

(800) 742-4453 

Texas

(800) 252-5400

Utah

(800) 678-9399

Virginia

(800) 552-7096 

Washington

(800) 562-5624 

West Virginia

(800) 352-6513
Protection of Human Subjects in Large Surveys 81

Appendix B. Using focus groups

A focus group is a homogeneous group of 4 to 12 people who are invited to present their

views on a specific topic. Group members are put at ease (typically over a meal) in a

gracious private setting. The moderator begins with a general question on the topic and

leads members to discuss aspects about which information is desired. Often the moderator

does not know just how the participants would frame or discuss the issue, and is open to

unplanned turns in the discussion. A recorder or note-taker keeps track of the ideas

discussed and recaps them at the end for further evaluation by the group. 

Focus groups motivate participants to think deeply and develop new ideas. While a survey

or interview generally only reveals which of various predetermined alternatives is true for

individuals or gleans facts such as age, a focus group can reveal entirely new insights never

contemplated before by the sponsor, the moderator, or the participants. A well-organized

focus group can take on a life of its own with little apparent leadership from the moderator. 

However the moderator always has a store of questions or probes that can be used to get

the discussion back on track if needed. Focus groups often go on longer than was planned,

with participants asking "When can we come and discuss this again?" The discussion is

usually highly involving and participants typically view the discussion as a valuable and

rewarding experience.

Market researchers often pay focus group members because their own interest is obviously

monetary, although the group may get excited about the new product or service, and find

participation useful in its own right. In most other contexts, monetary incentives are

inappropriate. Rather, researchers better express appreciation by giving participants a little

gift or a packet of useful information. Some focus groups are designed to explore the

possible value of new services, and the creation of the needed services is the most

rewarding outcome of the focus group. The traditional use of focus groups in business is for

market research. Homogeneous groups, representing segments of the target market, are

given an opportunity to look over a proposed new product or service (perhaps alternative

versions of it) to evaluate, discuss price point, use, and report what they like and dislike

about it. They might also discuss possible product extensions and ways in which they would

prefer to receive or use the product. The company uses the information to develop,

advertise, promote, distribute, and merchandise the item.

Effective focus groups are carefully planned. It should include the following essential

elements:

1. Know what questions you want answered and how to probe group members in case the

relevant information is not readily forthcoming. Organize questions and probes starting with
Protection of Human Subjects in Large Surveys 82

the most general and introductory and concluding with a summary question. Reduce these

to 5 to 7 very general questions.

2. Define target population. Who are the people whose opinion you want to know? 

3. Select groups of about 6 to 12 people, keeping each group as homogeneous and

compatible as possible. Do not mix genders, people of different status, or people who would

be guarded around one another. Groups may include friends or strangers.

4. Select good gatekeepers — people who will help communicate to each group why their

participation is a good idea, recruit individuals and groups, and find times and places to

meet.

5. Effectively invite them. The invitation may be via more than one channel. The

gatekeeper may do the initial recruitment, and follow up with a letter describing all of the

pertinent information. Offer appropriate incentive to participate.

6. Create a comfortable and private setting for the focus group.

7. Conduct the focus group, serve appropriate food, and summarize.

8. Organize responses around main questions or emergent themes. If more than one focus

group is conducted, identify main themes and tangential themes.

9. Prepare and disseminate report of findings. 

It is important that focus group members perceive the moderator as neutral to the topic of

the group. The idea is to get an entirely unbiased, uninhibited response to questions. If a

focus group member thinks a particular product, service, or idea is "really lousy," they must

feel free to say so. A focus group is of no value if its members feel constrained to say nice

things when they may feel otherwise. For example, a representative of the company should

not conduct a focus group evaluating a company's new product line and a representative of

management should not conduct a focus group that asks employees' evaluation of a

proposed new company policy. 
Protection of Human Subjects in Large Surveys 83

Focus groups are the method of choice when:

$ Exploring new ideas, such as proposed new product designs, services, or activities. 

Because people do not have experience or knowledge of these matters beforehand,

they need to discuss the idea before they can say how they feel about it.

$ Exploring ideas germane to a specific group, such as ideas about how to improve a

group activity that the group is engaged in, and about which group discussion and

evaluation is likely to be more useful than individual evaluation.

$ Exploring how others conceptualize and talk about an idea, including an old idea but

one that different groups conceptualize differently. Suppose, for example, a

physical trainer wished to consider offering exercise programs to elders living in a

retirement village. What would they like about such a program? What are their

reservations? How would they want to be trained? Focus groups could show

whether there is a market and how to reach it.

$ Seeking information from groups that will not respond to a survey. Literacy, time

pressures, ability to speak English, suspicion of strangers, or cynicism about

responding to surveys or phone interviews are factors that may necessitate use of

focus groups. Because of the motivation built by gatekeepers and the enthusiasm

that is sustained by the group setting — plus the possibility to tailoring the language,

setting, and staffing to the demography of the focus group members — it is possible

to get thoughtful, creative, and penetrating analysis from people who would not even

bother to respond or would respond thoughtlessly to a survey.

$ A quick answer is needed. Sometimes researchers can assemble, conduct, and

analyze results of one or more focus groups within a week or two, while a mailed

survey is likely to take months.

• One needs to know what to ask and how to ask it on a survey. A focus group may

be an essential prelude to developing and conducting a survey.

Surveys are useful when:

$ Seeking cut and dried answers to simple questions. If one knows how to ask the

questions in terms the respondents will understand, and researchers can locate and

motivate a representative group of respondents, surveys are most efficient tools.

$ Seeking demographic differences in response. Cross-tabulation of attitudinal and

behavioral responses with demographic variables shows who thinks (or does) what.

• One has a well defined target population and a directory enabling one to randomly

sample from that population. Random sampling assumes that one has a list of all
Protection of Human Subjects in Large Surveys 84

members of the population from which to sample. If the target population is defined by a

customer list or a membership directory, and if one's relationship with that population is

such that they are motivated to respond to your survey, a reasonable approximation of a

random sample might be achieved and valid responses may be obtained.

Interviews are useful when the topic has the characteristics of a focus group topic, but when:

$ The respondents are busy people who have neither the time nor inclination to fill out

surveys or attend focus groups.

$ The topic is sensitive and difficult for people to discuss in a group setting or to respond

to in a survey.

$ Logistics of meeting are impossible to surmount. When respondents are widely

disbursed geographically or have incompatible schedules, it may be necessary to hold

individual interviews rather than focus groups.

• While interviews have the advantage that persons' responses are individual and not

contaminated by those of other (focus group) members, they have the disadvantage that

they are not enriched by the creative process of group exchange and exploration.