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ResourcesHuman Research EthicsWhy Research Oversight Bodies Should Interview Research Subjects (Papers: Carl Elliott | 2017)

Australasian Human Research Ethics Consultancy Services Pty Ltd (AHRECS)

Why Research Oversight Bodies Should Interview Research Subjects (Papers: Carl Elliott | 2017)

 


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Even though this thought provoking paper only discusses investigations relating to ethical lapses (with impacts on participants) in medical research the matters explored are very relevant to all human research (e.g. a social science project and a situation where there is a breach of a participant’s privacy). Interviewing participants not only enables the investigators to form a more complete understanding of the lapse and its impact, it can be a valuable ‘learning institution’ strategy and signal to participants how seriously the institution is taking the matter.

Abstract
Research oversight bodies conducting for-cause investigations often fail to interview research subjects who have complaints of mistreatment. I argue that this failure is a mistake for three reasons. First, because written medical records are often inaccurate, there may be no entries in a study subject’s record about research-related medical harms. Second, research staff members write the reports that make up the research study records. If there are allegations that a research subject experienced research harms, subjects will rightly feel it is unfair that the for-cause investigation relies only on records written and kept by the research team. Third, the outcome of a for-cause investigation may be influenced by the ethical distance that results from failure to learn directly from research subjects about their complaints of mistreatment.
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Keywords:
Research subjects, human experimentation, human research subject protections, research ethics, research oversight, for-cause investigations
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Elliott C (2017) Why Research Oversight Bodies Should Interview Research Subjects. IRB: Ethics & Human Research. March-April 2017 39(2)
Publisher: http://www.thehastingscenter.org/irb_article/research-oversight-bodies-interview-research-subjects/



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