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Improving informed consent in bioinformatics research: a design-for-understanding approach
Rupa S Valdez1, Rupa Sheth Valdez, Jenna L Marquard
1Industrial and Systems Engineering, University of Wisconsin, Madison, USA.
Abstract:
Legally and ethically, researchers are required to ensure laypeople understand the informed consent process. Characteristics of the potential participants, their situation, and the study have been shown to affect laypeople's understanding. We propose a seven-step design-for-understanding approach to the development of an understandable informed consent document. Results from application of the approach to a large bioinformatics field study, HeartCare II, are provided.
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