Exploring Patient Organization Involvement in Stem Cell Research: Insights from the Lifeworld
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Date
2026
Authors
Lopes, E.
Ankeny, R.
Santos, D.
Hu, M.
Whitton, T.
Ivanov, M.
Leach, J.
Nicol, D.
Wells, C.
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Journal of Bioethical Inquiry, 2026
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Edilene Lopes, Rachel Ankeny, Dan Santos, Mengqi Hu, Tess Whitton, Michail Ivanov, Joan Leach, Dianne Nicol, Christine WellsEdilene Lopes, Rachel Ankeny, Dan Santos, Mengqi Hu, Tess Whitton, Michail Ivanov, Joan Leach, Dianne Nicol, Christine Wells
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Abstract
This article examines the role of patient organizations as mediators between patients and researchers in stem cell research in Australia. We conducted semi-structured interviews with stem cell researchers and patient organization representatives as part of a broader project to deepen public understanding and foster more robust scientific practices in stem cell-based research and therapies. We used Habermas’s Theory of Communicative Action as our theoretical framework to explore the relationships between patient organizations and researchers. Using this framework allowed the identification of two different ways of conceptualizing health and illness—one based on patients’ experiences, which we call “the lifeworld,” and another grounded on researchers’, health professionals’, and policymakers’ professional perspectives, which we call “the rational system.” We found that the different conceptualizations identified influenced the interactions between patients and researchers (and other professionals involved in the healthcare system). Patient organizations, then, act as articulators of patients’ viewpoints in this scenario, which can have advantages and disadvantages. We also found that researchers need to develop less transactional forms of communication with these organizations and that policymakers and regulators could benefit from developing guidelines to encourage researchers to use diverse strategies to engage more meaningfully with patients at individual and organizational levels.
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© The Author(s) 2026. This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made.