Infrastructuring Readability
Framing and Overflowing in Writing Assistant Software for Biomedical Research Informed Consent Forms
Bibliographic Data
| ID | 5337511 |
|---|---|
| Authors | L Riom (0000-0001-5122-5590, University of Lausanne, corresponding author), Solène Gouilher (0000-0002-6714-0900, University of Geneva), Solène Gouilhers (University of Geneva), Claudine Burton-Jeangros (0000-0003-2258-9728, University of Geneva) |
| Year | 2025 |
| Volume | 50 |
| Issue | 4 |
| Pages | 879-902 |
| Publication date | 2025-07-01 |
| Peer Reviewed | Yes |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | Science Technology & Human Values (JOURNAL) |
| Journal identifiers | ISSN: 0162-2439 • E-ISSN: 1552-8251 |
| Publisher | SAGE Publications Inc (PUBLISHER) |
| DOI | 10.1177/01622439241276262 |
| OpenAlex | W4403225968 |
| Language | EN |
| References cited | 48 |
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
Alternative medicine · Engineering ethics · Ethnography · Informed consent · Knowledge management · Readability · Research ethics · Sociology · Computer Science · Engineering · Ethics and Social Impacts of AI · Ethics in Clinical Research · Medicine · Viral Infections and Outbreaks Research
The Logic of Care
The ethical case against ethical regulation in humanities and social science research
Derivation of New Readability Formulas (Automated Readability Index, Fog Count and Flesch Reading Ease Formula) for Navy Enlisted Personnel
Interventions to Improve Research Participants' Understanding in Informed Consent for Research
Making Room for Ethics
Informed Consent
Between data providers and concerned citizens
Texts and the ontology of organizations and institutions
Powers of Freedom
Ethics was here’
Ethics Are Admin
Trust and regulatory organisations
A deviation from standard design? Clinical trials, research ethics committees, and the regulatory co-construction of organizational deviance
Bureaucracies of Mass Deception
National Biobanks
Strangers at the Bedside
Social Knowledge in the Making
Assessing biases, relaxing moralism
Constructing Participation in Genetic Databases
Texts on the Move
Ethics Creep
Ethics Beyond the IRB
Comités d'éthique et normalisation de la recherche médicale
An Essay on Framing and Overflowing
The Ethnography of Infrastructure
Some Elements of a Sociology of Translation
Situated Knowledges
Enquêter sur nos attachements. Comment hériter de William James
Observer l'éthique en train de se faire pour une approche pragmatique des commissions d'éthique de la recherche
Power, Ethics, and the IRB
Informed Consent
Enterprising or altruistic selves? Making up research subjects in genetics research
Empty ethics
| Citation velocity | historical |
|---|---|
| Highly cited | No |