Academic Journal
Exploring Patient Organization Involvement in Stem Cell Research: Insights from the Lifeworld.
| Τίτλος: | Exploring Patient Organization Involvement in Stem Cell Research: Insights from the Lifeworld. |
|---|---|
| Συγγραφείς: | Lopes E; School of Humanities, Adelaide University, Napier Building, Level 7, North Terrace, Adelaide, SA, 5005, Australia. edilene.lopesmcinnes@adelaide.edu.au., Ankeny R; Wageningen University, Hollandseweg 1(Building 201), 6706, KN, Wageningen, The Netherlands., Santos D; Australian National Centre for the Public Awareness of Science, Australian National University, 42a Linnaeus Way, Acton, ACT, 2601, Australia., Hu M; Stem Cell Systems, Anatomy and Physiology, Faculty of Medicine Dentistry and Health Sciences, University of Melbourne, Room 2.11, Level 2, Kenneth Myer Building, Parkville, VIC, 3010, Australia., Whitton T; Melbourne Law School, University of Melbourne, 185 Pelham Street, Carlton, VIC, 3053, Australia., Ivanov M; School of Humanities, Adelaide University, Napier Building, Level 7, North Terrace, Adelaide, SA, 5005, Australia., Leach J; Australian National Centre for the Public Awareness of Science, Australian National University, 42a Linnaeus Way, Acton, ACT, 2601, Australia., Nicol D; Faculty of Law, University of Tasmania, Private Bag 89, Hobart, TAS, 7001, Australia., Wells C; Stem Cell Systems, Anatomy and Physiology, Faculty of Medicine Dentistry and Health Sciences, University of Melbourne, Room 2.11, Level 2, Kenneth Myer Building, Parkville, VIC, 3010, Australia. |
| Πηγή: | Journal of bioethical inquiry [J Bioeth Inq] 2026 Sep; Vol. 23 (3), pp. 699-713. Date of Electronic Publication: 2026 Mar 17. |
| Τύπος έκδοσης: | Journal Article; Research Support, Non-U.S. Gov't |
| Γλώσσα: | English |
| Στοιχεία περιοδικού: | Publisher: Springer Country of Publication: Netherlands NLM ID: 101250741 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1872-4353 (Electronic) Linking ISSN: 11767529 NLM ISO Abbreviation: J Bioeth Inq Subsets: MEDLINE |
| Imprint Name(s): | Publication: Dordrecht : Springer Original Publication: Dunedin, N.Z. : Bioethics Centre, University of Otago |
| Ιατρικοί όροι (MeSH): | Stem Cell Research*/ethics , Communication* , Patient Participation* , Research Personnel*, Humans ; Australia |
| Περίληψη: | 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. (© 2026. The Author(s).) |
| Competing Interests: | Declarations. Ethics Approval: Ethics approval for this project was obtained from The University of Adelaide Human Research Ethics Committee (Ethics approval number H-2022–095). Written informed consent was obtained from all participants in this study. Competing interests: The authors have no relevant financial or non-financial interests to disclose. |
| References: | Soc Sci Med. 2017 Jun;183:62-69. (PMID: 28463721) Health Soc Care Community. 2022 Jul;30(4):e1078-e1091. (PMID: 34268822) Nurs Health Sci. 2007 Sep;9(3):185-91. (PMID: 17688476) Inf Commun Soc. 2016 Nov 1;19(11):1653-1671. (PMID: 27499676) Health Policy. 2017 Oct;121(10):1047-1052. (PMID: 28890239) EMBO Rep. 2009 Dec;10(12):1285-7. (PMID: 19949407) Bull World Health Organ. 2003;81(11):815-20. (PMID: 14758408) Bioethics. 2013 Feb;27(2):89-96. (PMID: 21726264) Health Policy. 2002 Aug;61(2):213-36. (PMID: 12088893) Health Expect. 2018 Feb;21(1):396-406. (PMID: 28984405) PLoS One. 2022 Jan 27;17(1):e0261808. (PMID: 35085276) Orphanet J Rare Dis. 2016 Jan 12;11:2. (PMID: 26754025) Stem Cell Reports. 2023 Feb 14;18(2):420-426. (PMID: 36736324) Health Policy. 2014 May;116(1):1-11. (PMID: 24485914) J Med Ethics Hist Med. 2016 Aug 28;9:10. (PMID: 27957287) Health Expect. 2008 Mar;11(1):85-94. (PMID: 18275405) N Engl J Med. 2017 Mar 2;376(9):880-885. (PMID: 28249131) Nat Rev Drug Discov. 2017 Feb;16(2):115-130. (PMID: 27980341) Sociol Health Illn. 2004 Jan;26(1):50-80. (PMID: 15027990) Int J Health Serv. 2019 Apr;49(2):273-293. (PMID: 30646806) Patient Prefer Adherence. 2020 Mar 12;14:587-597. (PMID: 32210544) Health Expect. 2014 Oct;17(5):637-50. (PMID: 22809132) Stem Cell Res. 2024 Sep;79:103482. (PMID: 38959701) J Bioeth Inq. 2018 Sep;15(3):359-368. (PMID: 29882180) Health Res Policy Syst. 2017 Feb 10;15(1):9. (PMID: 28187772) New Bioeth. 2020 Mar;26(1):3-16. (PMID: 32072871) Stem Cell Res Ther. 2019 Nov 21;10(1):341. (PMID: 31753034) J Bioeth Inq. 2022 Mar;19(1):61-69. (PMID: 35362920) Soc Sci Med. 2006 Feb;62(3):529-37. (PMID: 16054282) Cell Stem Cell. 2014 Jan 2;14(1):9-12. (PMID: 24388172) Annu Rev Genomics Hum Genet. 2012;13:415-31. (PMID: 22404490) |
| Grant Information: | MRF2008807 Department of Health and Aged Care, Australian Government |
| Contributed Indexing: | Keywords: Australia; Bioethics; Habermas; Patient involvement; Patient organizations; Stem cell |
| Entry Date(s): | Date Created: 20260317 Date Completed: 20261007 Latest Revision: 20261013 |
| Update Code: | 20261013 |
| PubMed Central ID: | PMC13645905 |
| DOI: | 10.1007/s11673-025-10516-6 |
| PMID: | 41843394 |
| Βάση Δεδομένων: | MEDLINE |
| ISSN: | 1872-4353 |
|---|---|
| DOI: | 10.1007/s11673-025-10516-6 |