Confidentiality & Research

Dr. Talbert and Class

Researchers in social and behavioral sciences are expected to be proactive in designing and performing research to ensure that the dignity, welfare, and privacy of individual research subjects are protected and that information about an individual remains confidential. Many studies pose minimal risk to research subjects. Some studies, however, are inaccurately perceived as conveying minimal risk that causes studies of disclose identifiable data to be identify as a significant risk to the subject by outlining sensitive topics of social interactions. In such research, especially in the social and behavioral sciences, protecting the confidentiality of data collected from or about private individuals is often the key element in minimizing risk (NHRPAC, 2002).

Confidentiality protections minimize subjects' concerns over the use (or misuse) of the data. Subjects consequently provide more accurate information to investigators, thereby improving the data used in the analysis and thus the overall quality of the research. Confidentiality protections allow researchers to continue to conduct difficult research on important societal problems (e.g., drug abuse, the spread of HIV, genetic predispositions, high risk sexual behaviors, violence) (NHRPAC, 2002).

The benefits of these results accrue not only to the research subjects, but to society at large. Confidentiality issues need to be recognized and considered at every stage of the research process. These stages include the initial study design; identification, recruitment, and consent processes for the study population; security, analysis, and final disposition of data; and publication or dissemination of data and results (NHRPAC, 2002). Therefore, research should be based on participants' freely volunteered informed consent. This implies a responsibility to explain fully and meaningfully what the research is about and how it will be disseminated.

Participants should be aware of their right to refuse to participate; understand the extent to which confidentiality will be maintained; be aware of the potential uses to which the data might be put; and in some cases be reminded of their right to renegotiate consent (Corti, 2000). Explaining the details of a research project and the intentions of the study intentions requires is a prerequisite before entering into fieldwork, but we should never assume that all participants have a detailed appreciation of the nature and aims of academic research. Finally, consent alone does not absolve the responsibility of researchers to anticipate and guard against potential harmful consequences for participants (Rolph, 2000).

References

Corti, Louise; Day, Annette & Backhouse, Gill (2000). Confidentiality and Informed Consent: Issues for Consideration in the Preservation of and Provision of Access to Qualitative Data Archives [46 paragraphs]. Forum Qualitative Sozialforschung / Forum: Qualitative Social Research, 1(3), Art. 7, http://nbn-resolving.de/urn:nbn:de:0114-fqs000372.

The National Human Research Protections Advisory Committee (NHRPAC), 2002. Confidentiality and Research Data Protections. Retrieved from www.hhs.gov/.../nhrpac1..