Communication in healthcare contexts: Multilingual technological resources to improve the communicative effectiveness of the Informed Consent
Isabel García-Izquierdo, Anabel Borja Albi
Cadernos de Tradução, September 2024
Abstract
Scientific advances and the complexity of the sociological context in which medicine is practised in an increasingly globalised and interconnected world raise new ethical and legal questions about the rights and obligations of patients, health professionals and public health care services. Despite the significant and undeniable progress brought about by the paradigm shift in the doctor-patient relationship and the great development of medical law and bioethics in recent years, patients continue to encounter serious linguistic and cultural obstacles to exercising their right to information and decision-making in relation to their health. In this paper we present part of the results of the HIPOCRATES research project of the Spanish GENTT group, aimed at humanising health care by improving doctor-patient communication in multilingual environments. Specifically, we will focus on the advances made in the textual analysis of the Informed Consent (IC), a medical genre of great relevance in clinical translation and writing due to its ethical and legal implications. Its lexical-syntactic complexity and the lack of standardised patterns in its writing hinder its comprehensibility and makes it difficult to identify the rhetorical sequences in which the communicative and legal functions of this genre are embodied. We present a textual analysis tool (ProText GENTT), which uses machine learning to exploit corpora with traditional techniques and artificial intelligence and with which we have analysed a multilingual (Spanish, Catalan and English) corpus of IC texts compiled by our research group (GENTT_Corpus). This analysis has allowed us to identify the linguistic-textual and rhetorical elements that hinder comprehension. From these results, our team is currently working on proposing optimized models with different levels of complexity both in printed and digital formats (e-consent).

Editor’s note: Cadernos de Tradução is published by the Federal University of Santa Catarina, Brazil.

Words, words, words: participants do not read consent forms in communication research
Research Article
Daria Parfenova, Alina Niftulaeva, Caleb T. Carr
Communication Research Reports, 22 July 2024
Abstract
Informed consent is an essential part of conducting human subjects research; but its utility is dependent on participants actually reading the consent forms provided. This research conducted secondary analysis of data (N = 1,283) to assess how long participants spent on the consent forms. Participants spent an average of 35.4 seconds on consent documents: not a nonsignficant amount of time (i.e., different from 0 seconds), but insufficient to read or even skim consent forms. Women spent slightly less time on consent forms. Neither the length nor readability of a consent form predicted time spent reading, and neither readability nor gender moderated the relationship between word count and time spent reading. Results suggest participants in communication studies do not spend enough time on a consent document to be able to read it, and therefore modern practices of informed consent do not ensure informed participation in research.

Responsible inclusion: A systematic review of consent to social-behavioral research with adults with intellectual disability in the US
Katherine E. McDonald, Ariel E. Schwartz, Robert Dinerstein, Robert Olick, Maya Sabatello
Disability and Health Journal, 2 July 2024
Abstract
Background
In recognition of their status as a health disparities population, there is growing emphasis on conducting research inclusive of adults with intellectual disability to generate new knowledge and opportunities to improve health and equity. Yet they are often excluded from research, and human research participant protection experts and researchers lack agreement on effective consent protocols for their inclusion.
Objective
We sought to identify approaches to consent in US-based social-behavioral research with adults with intellectual disability.
Methods
We conducted a systematic review on approaches to self-consent with adults with intellectual disability published between 2009 and 2023, identified via searching eight databases and reference list hand searches. We identified 13 manuscripts and conducted a thematic analysis.
Results
Our analysis identified themes related to guiding principles, strategies to enhance informed and voluntary consent, approaches to consent capacity, involving individuals subject to guardianship, and strategies for expressing decisions and enhancing ongoing decisions.
Conclusions
Manuscripts largely reflected an emphasis on identifying approaches to consent that reflect disability rights principles to promote the right to be included and make one’s own decisions based on assessment of relevant information, risks and benefits, and to employ reasonable modifications to achieve inclusion. To avoid the risks of exclusion and advance the responsible inclusion of adults with intellectual disability, we make recommendations to align consent approaches anchored in contemporary thinking about human research participant protections, including through integration with disability rights.