Ethical, legal, and social implications of digital health: A needs assessment from the Society of Behavioral Medicine to inform capacity building for behavioral scientists

TRANSLATIONAL BEHAVIORAL MEDICINE(2024)

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摘要
The ethical, legal, and social implications (ELSIs) of digital health are important when researchers and practitioners are using technology to collect, process, or store personal health data. Evidence underscores a strong need for digital health ELSI training, yet little is known about the specific ELSI topic areas that researchers and practitioners would most benefit from learning. To identify ELSI educational needs, a needs assessment survey was administered to the members of the Society of Behavioral Medicine (SBM). We sought to identify areas of ELSI proficiency and training need, and also evaluate interest and expertise in ELSI topics by career level and prior ELSI training history. The 14-item survey distributed to SBM members utilized the Digital Health Checklist tool (see recode.health/tools) and included items drawn from the four-domain framework: data management, access and usability, privacy and risk to benefit assessment. Respondents (N = 66) were majority faculty (74.2%) from psychology or public health. Only 39.4% reported receiving "formal" ELSI training. ELSI topics of greatest interest included practices that supported participant engagement, and dissemination and implementation of digital tools beyond the research setting. Respondents were least experienced in managing "bystander" data, having discussions about ELSIs, and reviewing terms of service agreements and privacy policies with participants and patients. There is opportunity for formalized ELSI training across career levels. Findings serve as an evidence base for continuous and ongoing evaluation of ELSI training needs to support scientists in conducting ethical and impactful digital health research. In this article, we uncover important knowledge and experience gaps among practitioners and researchers with regard to the ethical, legal, and social implications of technologies that collect personal health data. New technologies are increasingly used in research and practice, which introduce new ethical, legal, and social implications (ELSIs). While there are scholars who study ELSIs in research, it is important that behavioral scientists have ELSI training in order to identify and mitigate possible harms and maximize benefits among their patients/participants, particularly when using technologies that collect personal health information. ELSI training opportunities are limited and, because ELSI is a broad complicated field, we know very little about the specific topics that researchers/practitioners would benefit from learning. To understand ELSI training needs specific to the field of digital health, we asked the members of the Society of Behavioral Medicine, a multidisciplinary nonprofit organization, to tell us about which ELSI areas they are most interested in. We found that 39.4% of members received formal ELSI training. Members were most interested in using technology to help patients/participants stay engaged in their treatments, and developing technologies that can be used outside of research (in the "real world"). Members were least experienced in reviewing terms of service/privacy policies and handling information collected from non-patient/participants (people in the backgrounds of voice recordings/videos). Training interests differed by career level (faculty vs. students), and so future ELSI trainings could be more beneficial if they were mindful of prior experiences.
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关键词
digital health,behavioral science,behavioral medicine,research ethics,ethical, legal, and social implications
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