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Implications of Respect for Participants

David I. Shalowitz, AB; Franklin G. Miller, PhD

JAMA. 2005;294:737-740.

	Since this article does not have an abstract, we have provided the first 150 words of the full text and any section headings.

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.

When aggregate results of research correlate with aspects of the health and well-being of participants, disclosing individual results has the potential to significantly affect the lives of participants. Accordingly, investigators and institutional review boards (IRBs) should consider when and how participants should be informed of individual research results. This article reviews previously articulated policies . . . [Full Text of this Article]

Existing Standards

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

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Implications of Disclosing Individual Results of Clinical Research
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