Research Participants' Perceptions of the Certificate of Confidentiality's Assurances and Limitations

J Empir Res Hum Res Ethics. 2007 Dec;2(4):53-9. doi: 10.1525/jer.2007.2.4.53.

Abstract

THE CERTIFICATE OF CONFIDENTIALITY (COC) provides additional protections to personal and sensitive research data. COC guarantees are not absolute and investigators are obligated to inform potential participants of COC limitations. The present study utilized qualitative and partnership methodology to examine participants' (N = 24) perceptions of COC assurances and limitations in the context of a hypothetical study on depression. Although some participants were comforted by COC assurances, a majority of participants had confidentiality/privacy concerns specifically with COC passages concerning federal audits and legal reporting requirements. As one respondent noted, "Why is it that you guys don't have to turn the records over to the court unless I say so . . . but you have to give them over to the government? . . . I don't know about what is goin' on." Our findings underscore the need for larger quantitative investigations to examine the negative and positive impact of COCs on research participation and response bias.