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Published on: November 26, 2015
[Towards more informed consent: Making information understandable]
Diane Gozlan1, Marion Mathieu1, Sandrine de Montgolfier1
1Collège des relecteurs de l'Inserm, groupe de travail « Notices d'information », Inserm, Service sciences et société - Département information scientifique et communication, Paris, France.
Abstract:
In clinical research and care, information notices are too often reduced to complicated and hard-to-understand mandatory documents. However, every person has the right to transparent and truthful information. These considerations prompted the creation of a multidisciplinary working group in the fall of 2020, headed by the College des relecteurs de l'Inserm. This group associates the different actors involved in the development, evaluation and use of information notices: Health and research professionals, representatives of patient associations or research foundations, ethicists, jurists, scientific educators and communicators. This group has created a set of texts, pictograms and illustrations, adapted to the people concerned and accepted by all actors. These contents will be easily used by professionals through the app Noticeinfobox©. A pilot phase was conducted to generate the notices of the France Genomic Medicine Plan 2025, used for genetic examinations. This app Noticeinfobox© is a response to society's request to be an actor in its own healthcare and to adopt more ethical and responsible research.
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