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ELSIhub Collections

Empirical Evaluation of Arts-Based Informational Aids for ELSI Issues in the Clinic and Beyond

Publication Date:

Apr 7, 2021

Updated:

Apr 7, 2021

Collection Editor(s):

Associate Professor & Chief, Program in Medical Ethics and Humanities, Division of General Internal Medicine, Department of Internal Medicine, University of Utah School of Medicine

Darian Mikelle Hackney

J.D. Candidate, Program in Medical Ethics and Humanities Fellow, University of Utah S.J. Quinney College of Law

Introduction

The rapidly changing science of clinical genetics and the complexity of its associated ethical, legal, and social (ELSI) issues call for novel approaches to information delivery and education of healthcare professionals and the public. Compared to traditional communication methodologies, arts-based methods offer a way to reach a wider variety of audiences and engage them in multi-sensory, experiential learning. Among the arts, theatre and the visual arts, including video, photography, and graphic medicine (comic books and graphic novels on medical topics), have thus far been the most carefully studied to evaluate their utility as communication tools for clinical genetics and science topics more generally. Although this literature collection explores a variety of media, we focus substantially here on studies of graphic medicine and theatre. Graphic medicine has particular promise as a communication tool for ELSI issues because its combination of written language and images can be more appealing and easier to understand than written explanations alone. Theatre can include both observing and participating in scenarios depicting the practice of clinical genetics, which is important…

The rapidly changing science of clinical genetics and the complexity of its associated ethical, legal, and social (ELSI) issues call for novel approaches to information delivery and education of healthcare professionals and the public. Compared to traditional communication methodologies, arts-based methods offer a way to reach a wider variety of audiences and engage them in multi-sensory, experiential learning. Among the arts, theatre and the visual arts, including video, photography, and graphic medicine (comic books and graphic novels on medical topics), have thus far been the most carefully studied to evaluate their utility as communication tools for clinical genetics and science topics more generally. Although this literature collection explores a variety of media, we focus substantially here on studies of graphic medicine and theatre. Graphic medicine has particular promise as a communication tool for ELSI issues because its combination of written language and images can be more appealing and easier to understand than written explanations alone. Theatre can include both observing and participating in scenarios depicting the practice of clinical genetics, which is important in emphasizing that each person in a clinical scenario has an active role in any decision-making. This collection examines the potential of arts-based learning aids to convey scientific and medical information and explore attitudes about ELSI issues in clinical genetics, such as informed consent and research participation.

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Empirical evaluation of arts-based informational aids for ELSI issues in the clinic and beyond

Farinella, M. (2018). The potential of comics in science communication. Journal of Science Communication, 17(1), 1-17.
Newcomb, P. & Riddlesperger, K. (2007). Using improvisational theater to teach genetics concepts. Nurse Educator, 32(5), 227-230.
Rothwell, E., Botkin, J. R., Cheek-O'Donnell, S., Wong, B., Case, G.A., Johnson, E., Matheson, T., Wilson, A., Robinson, N. R., Rawlings, J., Horejsi, B., Lopez, A. M., & Byington, C. L. (2018). An empirical assessment of the short-term impacts of a reading of Deborah Zoe Laufer's drama Informed Consent on attitudes and intentions to participate in genetic research.AJOB Empirical Bioethics, 9(2), 69-76.
Coussens, M., Destoop, B., De Naets, S., Desoete, A., Oostra, A., Vanderstraeten, G., Van Waelvelde, H., & Van de Velde, D. (2020). A qualitative photo elicitation research study to elicit the perception of young children with developmental disabilities such as ADHD and/or DCD and/or ASD on their participation. PLoS ONE, 15(3), 1-20.
Dugger, C., Anderson, H. S., Miller, C. E., Wong, B., Johnson, E. P., & Rothwell, E. (2020). Assessing clinical education tools for expanded carrier screening. Journal of Genetic Counseling, 30(2), 606-615.
Rothwell, E., Johnson, E., Wong, B., Rose, N. C., Latendresse, G., Altizer, R., Zagal, J., Smid, M., Watson, A., & Botkin, J. R. (2018). The use of a game-based decision aid to educate pregnant women about prenatal screening: A randomized controlled study. American Journal of Perinatology, 36(3), 322-328.
Steinhardt, S. J., Clark, J. E., Kelly, W. N., & Hill, A. M. (2017). Active-learning strategies for legal topics and substance abuse in a pharmacy curriculum. American Journal of Pharmaceutical Education, 81(1), 1-12.
Amaral, S. V., Forte, T., Ramalho-Santos, J., & Girão da Cruz, M. T. (2015). I want more and better cells! - An outreach project about stem cells and its impact on the general population. PLoS ONE, 10(7), 1-16.
Kraft, S. A., Constantine, M., Magnus, D., Porter, K. M., Lee, S. S. J., Green, M., Kass, N. E., Wilfond, B. S., & Cho, M. K. (2017). A randomized study of multimedia informational aids for research on medical practices: Implications for informed consent.Clinical Trials, 14(1), 94-102.
Rothwell, E., Cheek-O'Donnell, S., Johnson, E., Wilson, A., Anderson, R. A., & Botkin, J. (2021). Exploring the use of a comic for education about expanded carrier screening among a diverse group of mothers. Journal of Communication in Healthcare, 14(3), 252-258.

Suggested Citation

Case, G. A., & Hackney, D. M. (2021). Empirical evaluation of arts-based informational aids for ELSI issues in the clinic and beyond. In ELSIhub Collections. Center for ELSI Resources and Analysis (CERA). https://doi.org/10.25936/0aqd-1f77

About ELSIhub Collections

ELSIhub Collections are essential reading lists on fundamental or emerging topics in ELSI, curated and explained by expert Collection Editors, often paired with ELSI trainees. This series assembles materials from cross-disciplinary literatures to enable quick access to key information.

ELSIhub Collections

Empirical Evaluation of Arts-Based Informational Aids for ELSI Issues in the Clinic and Beyond

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