Communicating Disclosure Risk in Informed Consent Statements
Couper, Mick P
Journal of empirical research on human research ethics : JERHRE 2010 Sep; 5(3): 1-8
For several years, we have experimented with various ways of communicating disclosure risk and harm to respondents in order to determine how these affect their willingness to participate in surveys. These experiments, which used vignettes administered to an online panel as well as a mail survey sent to a national probability sample, have demonstrated that (a) the probability of disclosure alone has no apparent effect on people's willingness to participate in the survey described, (b) the sensitivity of the survey topic has such an effect, and (c) making explicit the possible harms that might result from disclosure also reduces willingness to participate, in both the vignette and the mail experiments. As a last study in this series, we experimented with different ways of describing disclosure risk in informed consent statements that might more plausibly be used in real surveys, again using vignettes administered to an online panel. As suggested by our earlier work, we found that the precise wording of the confidentiality assurance had little effect on respondents' stated willingness to participate in the hypothetical survey described. However, the experimental manipulations did have some effect on perceptions of the risks and benefits of participation, suggesting that they are processed by respondents. And, as we have found in our previous studies, the topic of the survey has a consistent and statistically significant effect on stated willingness to participate. We explore some implications of these findings for researchers seeking to provide adequate information to potential survey respondents without alarming them unnecessarily.
Showing items related by title, author, creator and subject.
Couper, Mick P.; Singer, Eleanor (2009-12)If empirical estimates of disclosure risk are included in informed consent statements for surveys or other forms of research, participants must be able to understand the information provided. Using data from an online ...
Sepucha, Karen R; Fagerlin, Angela; Couper, Mick P; Levin, Carrie A; Singer, Eleanor; Zikmund-Fisher, Brian J (2010-09)An important part of delivering high-quality, patient-centered care is making sure patients are informed about decisions regarding their health care. The objective was to examine whether patients' perceptions about how ...
Deficits and Variations in Patients' Experience With Making 9 Common Medical Decisions: The DECISIONS Survey Zikmund-Fisher, Brian J; Couper, Mick P; Singer, Eleanor; Ubel, Peter A; Ziniel, Sonja; Fowler, Floyd J Jr.; Levin, Carrie A; Fagerlin, Angela (2010-09)Although many researchers have examined patient involvement and patient-provider interactions within specific clinical environments, no nationally representative data exist to characterize patient perceptions of decision ...