Search Abstracts | Symposia | Slide Sessions | Poster Sessions
“If it helps somebody, then I’m all in”: Ethical considerations in sharing audiovisual recordings of individuals with aphasia
Poster Session F, Friday, October 2, 2:45 - 4:45 pm, Wangari Maathai
Stephen M. Wilson1, Katelyn Melvin1, Tara Bretherton1, Lily Walljasper2, Sydney Franklin2, Michael de Riesthal2; 1University of Queensland, 2Vanderbilt University Medical Center
Research studies of individuals with aphasia often involve audiovisual recordings of speech and language evaluations, including connected speech samples. There are many potential benefits to sharing these datasets, including research applications (e.g., reanalyses, machine learning, acoustic investigations) and clinical education (e.g., giving clinicians and students the opportunity to observe a greater variety of patients and aphasic phenomena than they would encounter in typical clinical contexts). However, sharing audiovisual recordings poses an inherent ethical dilemma, because they include voices and faces and so cannot be deidentified even in principle. Moreover, connected speech samples often reference other types of identifying information. In deciding how to balance data sharing and patient privacy, it is critical to consider the perspectives of people with aphasia and their care partners. To our knowledge, this topic has not previously been investigated. We conducted semi-structured interviews with 21 participants, consisting of 11 individuals with aphasia and 10 care partners recruited from a longitudinal study of recovery from aphasia in the first year after stroke. Interviews were conducted shortly after participants’ final study timepoints. Prior to each interview, participants were shown their own data via a private data sharing portal, including their audiovisual recordings and neuroimaging data, to ensure they had a clear and concrete understanding of what data sharing would entail. Interview responses were transcribed and analysed inductively using reflexive thematic analysis. Three themes were developed to describe participants’ attitudes towards data sharing: (1) motivation to help others; (2) sharing data is valuable for clinical education and research; and (3) sharing within limits. Participants were strongly motivated to help other stroke survivors, viewing data sharing as a way to give meaning to their own difficult experiences and inspire hope in others. They recognised the value of their data for training health professionals and students, and for advancing scientific understanding of aphasia recovery. Notably, participants were open to sharing personal information disclosed during connected speech samples, and even vulnerable moments such as struggling to retrieve words or formulate sentences, provided that viewers were well-intentioned and access was restricted to legitimate research or clinical purposes. Participants also expressed comfort with sharing their neuroimaging data. The primary limitations participants raised were the removal of identifying information such as names and addresses, and opposition to unfettered public dissemination of their videos, with one participant memorably drawing the distinction that sharing with researchers was acceptable because “it’s not like TikTok, they’re scientists.” Our findings support current audiovisual data sharing practices (e.g., AphasiaBank) and offer new evidence that people with aphasia are comfortable sharing audiovisual recordings, including personal information and vulnerable moments, for research and clinical purposes. Participants had clearly reflected on the tension between their strong desire to help others and their privacy concerns, and expressed thoughtful and nuanced views about the limits of sharing. These findings underscore the importance of involving people with aphasia and their care partners in decisions about how their data are shared, and of ensuring that consent processes clearly communicate data sharing plans and options.
Topic Areas: Disorders: Acquired, Development of Resources, Software, Educational Materials, etc.