Personal Privacy in an Information Society. The Relationship Between Citizen and Government: The Citizen As Participant in Research and Statistical Studies


The variety of research and statistical studies that require the collection of information in individually identifiable form is limited only by the interests and concerns of society for human wants and needs, and by the assumptions of researchers and statisticians as to the topics that merit exploration. This chapter reports on the Commission's examination of these activities and recommends action by the Congress and agencies of the Federal government to protect the interests of individuals who are the subjects of research and statistical records developed under Federal authority or with Federal funds.

The Commission's examination of the collection, maintenance, use, and dissemination of information and records about individuals for research or statistical purposes was premised on the following observations.

First, research and statistical activities generally do not lead to an immediate or direct benefit for the individual subject as such. The researcher asks for the individual's participation or for information about him, but society as a whole, rather than the individual, is the ultimate beneficiary.

Second, research and statistical activities depend heavily upon the voluntary cooperation of the individual in providing accurate and reliable information. On the theory that responses will be more candid and complete if individuals are convinced that the information they provide will not come back to haunt them, researchers who directly question subjects usually assure them confidentiality and, when the study design calls mainly for observation, the observer usually promises anonymity.

Third, assuring that information will not be disclosed to third parties in individually identifiable form is especially important in research on deviant behavior, such as drug and alcohol abuse, gambling, and prostitution; in studies of topics such as abortion and institutionalized discrimination; and in probes of public attitudes on controversial social issues, such as busing and welfare.

Fourth, both government agencies and research institutions outside government are undertaking more and more of the kinds of studies that require assurances of confidentiality or anonymity. The vast banks of records on individuals built up by the Federal government in the course of performing its legitimate functions constitute a valuable data resource for research and statistical activities. Some of these records are currently released in anonymous form for general public use. Because careful removal of the elements of individual identification is a complex and expensive process, however, the rich lode of agency data has barely been tapped.

Fifth, different research and statistical projects use widely differing methods of collecting information about individuals. These differences affect the relationship between researcher and subject, which, in turn, affects the individual's ability to comprehend and control the way information about him is used. In a laboratory setting there is likely to be a close working relationship between researcher and subject. Surveys based on personal interviews similarly involve a direct, if somewhat more transient, relationship. Telephone interviewing, of course, weakens the relationship considerably, and mail surveys can be conducted without any personal contact. When information is extracted from program records or data archives, the individual subject is seldom even aware that information about him is being used.

After examining the standards and procedures for the protection of personal privacy in a number of research and statistical activities, the Commission reached three main conclusions:

  • Research and statistical activities are becoming more dependent on information originally collected or maintained for administrative purposes, a dependence that attenuates the relationship between researcher and data subject and weakens the individual's ability to control the way information about him is collected and used.
  • While an expectation of confidentiality is, and has been, an integral part of research and statistical activities, their growing number raises serious questions about the validity of that expectation.
  • The use of individually identifiable research and statistical records for administrative, regulatory, or law enforcement purposes encourages abuse of the expectation that information will be kept confidential.

The Commission's principal objective is to strike a proper balance between the individual's interest in personal privacy and society's need for knowledge. In research and statistical activities, the threat to personal privacy comes mainly from information and records collected and maintained in individually identifiable form. Thus, the Commission believes that the first and fundamental step toward achieving the desired balance is to establish a clear boundary between the use of such information (regardless of source) that is collected, maintained, or disseminated for a research or statistical purpose, and the use of information that is collected, maintained, or disseminated for other purposes. Assuming that such a functional boundary can be established, the Commission proposes policy and rules for the transfer of individually identifiable information or records within and across the boundary, and identifies the role it believes an individual should play in such transfers.

The Commission's public-policy objectives here are, as in other areas of its inquiry, to minimize intrusiveness, to maximize fairness, and to create a legitimate, enforceable expectation of confidentiality. The recommendations in this chapter aim mainly at achieving the third goal; that is, at strengthening and systematizing the confidential status of individually identifiable information used for research and statistical purposes. A clearly marked boundary between the use of information for such a purpose and its use for administrative or other purposes is an essential first step in eliminating the possibility that the information an individual contributes directly or indirectly to a research or statistical activity will be used to his detriment.

Nevertheless, minimizing intrusiveness and maximizing fairness are also of concern to the Commission here. The close dependence of research and statistical activities on public cooperation acts as a natural brake on intrusiveness in the nature of the questions asked of research subjects. The notice and consent requirements specified in Recommendations (10), (11) and (12), below, would reduce intrusiveness by reinforcing the individual's right to refuse to participate in the data-collection process. They also promote fairness in collection practices by specifying the ground rules for use and disclosure of the data collected. Recommendation (13) promotes fairness by assuring the individual an opportunity to see and copy any record about himself that is disclosed unless the record keeper can guarantee that the record itself, or the individually identifiable information it contains, will not be used to his detriment.

The Commission's study focused on federally controlled or assisted research and statistical activities and thus its recommendations are confined to research and statistical activities in that category. This limitation should not be interpreted as a judgment by the Commission that the protection of individually identifiable data is of concern only when there is some Federal involvement. Rather, it recognizes that most of the country's organized research and statistical activities are at least partially dependent on Federal funding, and that where there is Federal involvement, some means of protecting record confidentiality already exist and are being used to at least some degree. (1)

The Commission considers its general principles valid as guidelines for research and statistical activities beyond the reach of Federal involvement. The Commission does not have enough evidence to judge whether these guidelines will need modification to make them generally applicable, or to suggest policy mechanisms for implementing them where research and statistical activities are independent of the Federal government. The Commission does believe, however, that the recommendations in this chapter can serve as a paradigm for the guidance of all research and statistical activities