Studies of Welfare Populations: Data Collection and Research Issues. Confidentiality

06/01/2002

Confidentiality is strongly associated with the fundamental societal values of autonomy and privacy. One definition of confidentiality is that it is "a quality or condition accorded to information as an obligation not to transmit that information to an unauthorized party" (National Research Council and Social Science Research Council, 1993:22). This definition leaves unanswered the question of who defines an authorized party. Another definition of confidentiality is more explicit about who determines authorization. Confidentiality is the agreement, explicit or implicit, made between the data subject and the data collector regarding the extent to which access by others to personal information is allowed (National Research Council and Social Science Research Council, 1993:22). This definition suggests that the data subject and the data collector decide the rules of disclosure.

Confidentiality rules ensure that people's preferences are considered when deciding with whom data will be shared. They also serve a pragmatic function, encouraging participation in activities that involve the collection of sensitive information (e.g., medical information gathered as a part of receiving health care). Guarantees of confidentiality are also considered essential in encouraging participation in potentially stigmatizing programs, such as mental health and substance abuse treatment services, and HIV screening programs.

Confidentiality limits with whom personal information can be shared, and confidentiality rules are generally found in program statutes and regulations. Varying levels of sensitivity are associated with different data. Accordingly, variations in privacy and confidentiality protections can be expected.

Confidentiality requires the development of some method whereby the limits on data disclosure can be determined. In most situations, the data collection organization (which may be a governmental agency) and the source of the information should be involved in determining this method. In addition, as the government, as the representative of the general public, has an obvious interest in regulating the use of confidential information. There are several ways that these parties can ensure confidentiality, including anonymity, informed consent, and notification.

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