Scientific article
OA Policy
English

Infrastructuring Readability: Framing and Overflowing in Writing Assistant Software for Biomedical Research Informed Consent Forms

Published inScience, technology & human values, 01622439241276262
Publication date2024-10-08
First online date2024-10-08
Abstract

This article analyzes the development process of a software solution designed to assist researchers in writing biomedical research–informed consent forms. Funded by a Swiss ethics committee, the purpose of the software is to enhance the readability of such documents to improve biomedical research participants’ understanding of the information disclosed therein and to reduce the editing work of research ethics committees. Drawing on an embedded ethnographic research, we show how concerns that emerge in ethics reviews shape ethics committee IT infrastructure and how, in turn, this infrastructure contributes to redefining research ethics. We demonstrate that while the software reinforces the biomedical framing of research ethics, it also generates unexpected overflows. By forming new collectives, this infrastructuring process furthers expertise on informed consent forms while giving rise to new areas of inquiry and redefining the issue of readability in biomedical research. Thus, we provide insights into the complex entanglements between research ethic, computer programs, and writing practices. We conclude by reflecting on the role played by our research team during the software's development and outline proposals on how ethnographic methods can contribute to make research ethics review accountable.

Keywords
  • Ethics committees
  • Software
  • Readability
  • Research ethics
  • Informed consent form
  • Infrastructure
Funding
  • Commission cantonale d'éthique de la recherche du Canton de Genève
Citation (ISO format)
RIOM, Loïc, GOUILHERS, Solene, BURTON-JEANGROS, Claudine. Infrastructuring Readability: Framing and Overflowing in Writing Assistant Software for Biomedical Research Informed Consent Forms. In: Science, technology & human values, 2024, p. 01622439241276262. doi: 10.1177/01622439241276262
Main files (1)
Article (Published version)
Identifiers
Journal ISSN0162-2439
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199downloads

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