Disclosure Issues in Neuroscience Research

Authors: Parker, Lisa1; Kienholz, Michelle2

Source: Accountability in Research: Policies and Quality Assurance, Volume 15, Number 4, October 2008 , pp. 226-241(16)

Publisher: Taylor and Francis Ltd

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Abstract:

Issues of disclosure arise in neuroscientific research during the informed consent process, whenever incidental findings are identified, and when study results are generated. The possibility of disclosure of incidental findings and/or research results may raise informational expectations on the part of subjects and may alter a study's risk:benefit ratio. We recommend that the informed consent process address this potential consequence of research participation, and specify the conditions under which particular types of information will be offered, the conditions under which information may not be disclosed, and any provisions for helping subjects make sense of the information to be disclosed.

Keywords: disclosure; ethics; incidental findings; informed consent; neuroethics; neuroscience research; research results

Document Type: Research article

DOI: 10.1080/08989620802388697

Affiliations: 1: Center for Bioethics and Health Law, University of Pittsburgh, Pittsburgh, Pennsylvania, USA 2: University of Pittsburgh, Pittsburgh, Pennsylvania, USA

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