title: An unexplored ethical issue in clinical research: disclosure of individual findings in the Creando Posibilidades [Creating Possibilities] study.
abstract: Individual disclosure refers to the presumptive ethical responsibility of an investigator to communicate to a study participant information that was collected as a part of a research study protocol and is specific to the individual. Currently, there are no federal regulatory guidelines specifying the conditions and management of disclosure of health-related individual-specific information. In this report, the authors discuss the challenges associated with individual disclosure in the context of a longitudinal descriptive study. Arguments favoring disclosure and those challenging disclosure as a general ethical duty are presented. Finally, strategies for addressing individual disclosure are discussed using a research exemplar in which risk behaviors related to health outcomes were measured.
authors: School of Nursing, University of Rochester, Box SON, Helen Wood Hall, 601 Elmwood Avenue, Rochester, NY 14642, USA.
authors: Karen Farchaus
authors: KF
authors: Stein
authors: Colleen
authors: C
authors: Keller
authors: Astrid
authors: A
authors: Fishstrom
mesh_terms: D000293:Adolescent; D000328:Adult; D035843:Biomedical Research / Q000941:ethics*; D030881:Disclosure / Q000941:ethics*; D001068:Feeding and Eating Disorders / Q000208:ethnology / Q000523:psychology; D005260:Female; D006801:Humans; D007258:Informed Consent / Q000941:ethics*; D008137:Longitudinal Studies; D017058:Mexican Americans / Q000208:ethnology; D012649:Self Concept; D013334:Students; D014481:United States; D014495:Universities; D055815:Young Adult