Exploring Understanding of "Understanding": The Paradigm Case of Biobank Consent Comprehension.

Journal Article (Journal Article)

Data documenting poor understanding among research participants and real-time efforts to assess comprehension in large-scale studies are focusing new attention on informed consent comprehension. Within the context of biobanking consent, we previously convened a multidisciplinary panel to reach consensus about what information must be understood for a prospective participant's consent to be considered valid. Subsequently, we presented them with data from another study showing that many U.S. adults would fail to comprehend the information the panel had deemed essential. When asked to evaluate the importance of the information again, panelists' opinions shifted dramatically in the direction of requiring that less information be understood. Follow-up interviews indicated significant uncertainty about defining a threshold of understanding and what should happen when prospective participants are unable to grasp key information. These findings have important implications for urgently needed discussion of whether consent comprehension is an ethical requirement or an ethical aspiration.

Full Text

Duke Authors

Cited Authors

  • Beskow, LM; Weinfurt, KP

Published Date

  • May 2019

Published In

Volume / Issue

  • 19 / 5

Start / End Page

  • 6 - 18

PubMed ID

  • 31068107

Pubmed Central ID

  • PMC6824537

Electronic International Standard Serial Number (EISSN)

  • 1536-0075

Digital Object Identifier (DOI)

  • 10.1080/15265161.2019.1587031


  • eng

Conference Location

  • United States