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August 10, 2005

Disclosing Individual Results of Clinical Research: Implications of Respect for Participants

Author Affiliations

Author Affiliations: Department of Clinical Bioethics, National Institutes of Health, Bethesda, Md.

JAMA. 2005;294(6):737-740. doi:10.1001/jama.294.6.737

Controversy exists about the responsibility of investigators to communicate the results of research to study participants. These research results may be categorized as either general study results, which represent aggregate data usually published by the research team, or individual results, which are research findings relevant to particular participants. Disclosure of individual research results has become particularly contentious in the context of genetics research, for which genotypes of individual participants often become known to investigators.1 However, disclosure of individual results should be addressed in all research involving human participants.