Practice 7: Respect for the Privacy and Autonomy of Data Providers
TO MAINTAIN A RELATIONSHIP OF RESPECT and trust with survey participants and other data providers, a statistical agency should respect their privacy. One aspect of this practice is to minimize the burden imposed on them. A statistical agency should also respect and enhance respondents’ autonomy—in the sense of their ability to make informed decisions—when they are asked to participate in a voluntary program to collect data. Even for mandatory data collections, such as the decennial and economic censuses, a statistical agency respects its respondents by giving them as much information as possible about the reasons for the collection and making it as easy as possible for them to respond. The principles and practices of respect apply not only to individuals asked to participate in a survey, but also to representatives of organizations (e.g., businesses, state and local governments) asked to participate in a survey and to custodians of already collected data, such as administrative records, who are asked to share their data for statistical purposes.
Clear policies and effective procedures for respecting privacy and enhancing autonomy are critical to maintaining the quality and comprehensiveness of the data that federal statistical agencies provide to policy makers and the public. Part of the challenge for statistical agencies is to develop effective means of communicating not only the agency’s privacy protection procedures and policies, but also the importance of the data being collected for the public good.
RESPECTING PRIVACY IN SURVEYS
To promote trust and encourage accurate response from survey respondents, it is important that statistical agencies respect their privacy by reducing, to the extent possible, the time and effort required to respond and by giving them adequate information with which to decide if a survey is worthy of response—that is, to give their informed consent (see below). Thus, when individuals or organizations are asked to participate in a survey, they should be told whether it is mandatory or voluntary, how the data will be used, and who will have access to the data.70 They should also be informed of the likely duration of an interview and, if the survey involves more than one interview, how many, and whether they will be asked to consult records.
To reduce the burden of replying to surveys (see National Academies of Sciences, Engineering, and Medicine, 2016; National Research Council, 2013a:Ch. 4), statistical agencies should write clear questions that fit respondents’ common understanding; minimize the intrusiveness of questions and explain why intrusive-seeming questions serve important purposes; allow alternative modes of response when appropriate (e.g., Internet, smartphone); and use administrative records or other data sources, if sufficiently complete and accurate, to provide some or all of the needed information. In surveys of businesses or other organizations, agencies should seek to obtain information directly from the organization’s records and so minimize the need for duplicate responses to multiple requests. Agencies should also use qualified, well-trained data collection staff who can establish trust with respondents.
Agencies can explore ways in which participation can be made easier for respondents and result in more accurate data through such means as focus group discussions and surveys. Many agencies apply the principles of cognitive psychology to questionnaire design (National Research Council, 1984) and make use of paradata, in order to increase the accuracy of the survey results and make more efficient use of the time and effort of respondents (National Research Council, 2013a:Ch. 3).71 Some agencies
70 Statistical agencies typically use general language about the intended uses and users of the survey data, such as that the data will be used for statistical and research purposes. A good example of helpful language for a respondent that is more specific is the information provided as an attachment to the advance letter soliciting participation in the Bureau of Labor Statistics’ National Longitudinal Survey of Youth 1979 (see https://www.bls.gov/nls/handbook/2005/nlshc9.pdf [April 2017].
71 Paradata are data collected automatically and in real time about the data collection process, such as the number of seconds to complete each question. Paradata can be used after the fact to evaluate data quality and alter design features or, increasingly, in adaptive or responsive designs, to make real-time decisions about nonresponse follow-up efforts.
thank respondents for their cooperation by providing them with summaries of the information after a survey is compiled.
It is likely that increasing concerns about privacy are contributing to the recent declines in survey response rates. At a time when people are inundated with requests for information from public and private sources, there are publicized instances of identity theft and other abuses of confidential information on the Internet, and individual information is used for terrorism-related investigatory or law enforcement purposes, it is not surprising that some people are choosing not to participate in censuses and surveys, even when the questions appear noninvasive and the data are collected for statistical purposes under a pledge of confidentiality.72 Statistical agencies need to devote resources to understanding respondents’ privacy and confidentiality concerns.
Several laws address privacy and confidentiality concerns government-wide. For example, the 2002 E-Government Act requires agencies to publish privacy impact assessments (PIAs) whenever “initiating a new collection of information [that] includes any information in an identifiable form.” The purpose of PIAs is to ensure there is no collection, storage, access, use, or dissemination of identifiable information that is not both needed and permitted. The 2015 Federal Cybersecurity Enhancement Act enjoins agencies to use sophisticated computer network scanning technology to detect and prevent hacking of records by unauthorized individuals. This enhanced privacy protection is now referred to in statistical agencies’ confidentiality protection pledges (see Appendix A).
The challenge is to devise effective strategies for communicating these and other privacy and confidentiality policies and practices to respondents. Such strategies appear to be more necessary—and more challenging—than ever before.
PROTECTING AND RESPECTING THE AUTONOMY OF HUMAN RESEARCH PARTICIPANTS
Collecting data from individuals for research purposes with federal funds falls under a series of regulations, principles, and best practices that the federal government has developed over a period of more than 50 years (see National Research Council, 2003b, 2014c). The pertinent regulations, which have been adopted by 11 departments and 6 agencies, are known as the “Common Rule” (45 CFR 46). The Common Rule regulations (most recently revised in January 2017 to take effect in January 2018) require that researchers adequately protect the privacy of human participants and
72 For a literature review of public opinion on privacy in the wake of the September 11, 2001, terrorist attacks, see National Research Council (2008a:App. M).
maintain the confidentiality of data collected from them, minimize the risks to participants from the data collection and analysis, select participants equitably with regard to the benefits and risks of the research, and seek the informed consent of individuals to participate (or not) in the research.73 Under the regulations, most federally funded research involving human participants must be reviewed by an independent institutional review board (IRB) to determine that the design meets ethical requirements for protection.74
Not all federal statistical agencies consider all of their information collections to be subject to IRB review. They should, nonetheless, strive to incorporate the spirit of the Common Rule in the design and operation of all activities that involve data collection from individual respondents.
For activities for which IRB approval is required for data collection, an agency should work proactively with the IRB to determine how best to apply the regulations in ways that do not unnecessarily inhibit participant responses. For example, implied consent is typically used for mail and telephone surveys of the general population: written documentation does not generally provide any added protection to the respondent and could reduce participation. Statistical agencies should seek ways—such as sending an advance letter—to furnish information to potential respondents that will help them make an informed decision about whether to participate. Such information should include the planned uses of the data and their benefits to the public. Statistical agencies should then respect the contributions of respondents by compiling the data and making them accessible to users in convenient forms. A statistical agency has an obligation to publish statistical information from the data it collects unless it finds the results invalid, in which case the agency should publish an explanation of why results from a data collection were not of sufficient quality to be made available.
RESPECTING THE PROVIDERS OF ALTERNATIVE DATA
An essential element of moving to a new paradigm of using multiple data sources for federal statistics is for a statistical agency to develop procedures and practices that respect the time and other constraints of organizations that provide alternative (nonsurvey) data. Statistical agencies should not assume the cooperation of either other federal agencies or nonfederal providers.
73 “Federal Policy for the Protection of Human Subjects,” 82 Federal Register 7149 (January 19, 2017) (available: https://www.federalregister.gov/d/2017-01058 [April 2017]); see also Appendix A.
74 For information about the Common Rule and certification of IRBs by the Office for Human Research Protections in the U.S. Department of Health and Human Services, see http://www.hhs.gov/ohrp [April 2017].
In working with federal agencies that hold useful administrative records, statistical agencies should plan to cooperate, communicate, and coordinate with them on a continuing basis, as urged in Hendriks (2012). The process should begin with a properly developed memorandum of understanding (see U.S. Office of Management and Budget, 2014a:App. B). Through a continuing relationship of mutual respect and trust, a statistical agency can better understand the strengths and limitations of a custodial agency’s data and help identify and implement improvements in the data that are useful to both agencies.75
An important consideration in using administrative records is whether informed consent of the individuals or organizations that provided their information to the custodial agency is required. The U.S. Office of Management and Budget (2014a:App. A) identifies situations in which the statistical use of administrative records may qualify under the “routine use” exception of the Privacy Act or may qualify once the statistical agency has developed or modified an appropriate System of Records Notice (see Appendix A). In some instances, it may be necessary to obtain new consent of the original data providers.
75 Working with nonfederal providers will also require relationships of mutual respect and trust. The specific issues for such relationships, including whether payment may be required, are likely to be provider-specific and so are not discussed here. A coordinated approach on the part of OMB and the statistical agencies would be helpful.