The epidemiologic basis for the notification of subjects of cohort studies.
Am J Epidemiol 1985 Mar; 121(3):351-361
The epidemiological basis for the notification of subjects of the positive results of occupational retrospective cohort mortality studies was examined. The assumptions underlying the issue of notification and the issues and criteria that should be considered prior to notification were addressed. Topics included: inherent limitations of cohort mortality studies; pertinency of study results to cohort members; risk to survivors; simultaneous inferences; weighing the decision to notify; proposed criteria for notification; methodologic integrity; adjusted statistical significance; and consideration of the magnitude of absolute lifetime risk. The author concludes that people have a fundamental right to know their own study results and hence their cohort's risks regardless of whether there are intervention possibilities. The establishment of explicit criteria for notification is critical to the orderly evaluation of research results as they pertain to the surviving subjects.
Epidemiology; Occupational-exposure; Mortality-surveys; Risk-analysis; Health-surveys
Dr. Paul A. Schulte, Mail Stop R-13, NIOSH, 4676 Columbia Parkway, Cincinnati, OH 45226
American Journal of Epidemiology