Disclosure

Within the context of survey research, disclosure can be used with two distinct meanings. In the first meaning, a researcher is required to provide full disclosure of his or her own identity and purpose in collecting data. In the second meaning, a researcher is required to prevent disclosure of information that could be used to identify respondents, in the absence of specific and explicit informed consent allowing the researcher to disclose such information.

However, in some research settings, full disclosure of the research objectives may jeopardize the objectivity of results or access to research participants. Observational research of behavior in public settings, for example, may be exempt from rules of informed consent, since the public nature of the behavior itself implies consent. Nevertheless, in this situation, the researcher ideally should provide detailed justification [Page 202]for the data collection methodology in any research proposal or data presentation, and the methodology should be subject to peer and ethical review. In addition, the participants' right to privacy, anonymity, and confidentiality gains additional importance in such cases, since respondents have not given explicit consent and are not cognizant of the purpose or objective for which they “provide” information. Whenever possible, participants should be debriefed as to the research objectives and use of data after completion of the research or observation and given the opportunity to refuse participation.

Another situation that challenges many researchers in the effort to fully disclose their role and objective as researchers is one in which gatekeepers are involved. When gatekeepers control access to the participants of the research, full disclosure to the gatekeeper is necessary but not sufficient to gain access to the research participant. Permission obtained from the gatekeeper may not be substituted for the need to take separate and full informed consent of the participants. The rights of participants in such situations are the same as in all other cases and need determined protection.

In the second use of the term, disclosure of a respondent's identity or identifying information is prohibited in the absence of specific, informed consent. Research for which disclosure of the subject's identity and/or responses could put the individual at risk of criminal or civil liability or damage the subject's financial standing, employability, or reputation is especially problematic and is generally subject to review by an institutional review board.

Disclosure risks may involve a direct risk, when the disclosure of a respondent's identity or responses may cause harm to the respondent because of the nature of the data themselves, or the risk may be indirect, when risk involves the potential for combining the collected data with an external database through which individuals may be identified and confidential information exposed. This indirect disclosure risk is becoming far more problematic nowadays with the availability of many various data sources, and respondent protections are increasingly focused on this second type of disclosure risk.

Recent expansion in the aggregation of data from a variety of sources that link individuals using identifying information has increased researchers' concerns about confidentiality protection and the disclosure of research subjects' identity. Although confidentiality is promised in the data collection process, the obligations of those disseminating “cleaned” data sets are often less formal and less clear. As commercial databases that include names, addresses, and other sensitive information have become more accessible, the potential for misuse has grown.

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