When Good Intentions Are Not Enough: Ethical Tensions in Rare Disease Care in Indonesia
DOI:
https://doi.org/10.7202/1126629arKeywords:
Indonesia, solidarity, beneficence, justice, rare diseaseLanguage(s):
EnglishAbstract
This case study examines a child with a rare genetic condition in Indonesia whose access to care depended on community mobilization in the context of limited institutional support, revealing a tension between the principles of beneficence and justice in resource-constrained health systems. While acts of beneficence are morally commendable, we argue that justice should take priority by motivating equitable, institutional solutions that avoid reliance on ad hoc community goodwill and prevent unequal access to care among patients with comparable needs.
References
1. Shafie AA, Chaiyakunapruk N, Supian A, et al. State of rare disease management in Southeast Asia. Orphanet J Rare Dis. 2016;11:107.
2. Utari A, Faradz SMH, Ediati A, et al. Challenges in the treatment of late-identified untreated congenital adrenal hyperplasia due to CYP11B1 deficiency: Lessons from a developing country. Front Endocrinol. 2022;13:1015973.
3. Sari JI, Pramudani AH, Ediati A, Utari A. Caring for girls with salt-wasting congenital adrenal hyperplasia: A qualitative study from Central Java, Indonesia. J Pediatr Health Care. 2025;40(3):e38-47.
4. Mascarenhas JV, Ayyar VS. Russell Silver syndrome: a perspective on growth and the influence of growth hormone therapy. Indian J Endocrinol Metab. 2012;16(5):840-2.
5. Piekoszewska-Ziętek P, Witt-Porczyk A, Chrzanowska K, Zadurska M, Kowalczyk DO. Silver-Russell syndrome: phenotype features and oral health status. Orphanet Journal of Rare Diseases. 2025;20:370.
6. Ariani Y, Soeharso P, Sjarif DR. Genetics and genomic medicine in Indonesia. Mol Genet Genomic Med. 2017;5(2):103-9.
7. Budiastrawan IPA. Keluarga Tak Mampu, Yahya Terpaksa Enam Bulan Tidak Berobat. detikbali. 18 Jan 2023.
8. Prainsack B, Buyx A. Solidarity in Biomedicine and Beyond. Cambridge: Cambridge University Press; 2017.
9. Susilo D, Wulandari LPL, Sukmayeti E, et al. Can Indonesia achieve universal health coverage? Organisational and financing challenges in implementing the national health insurance system. SSM - Health Systems. 2025;5:100138.
10. Sambodo NP, Van Doorslaer E, Pradhan M, Sparrow R. Does geographic spending variation exacerbate healthcare benefit inequality? A benefit incidence analysis for Indonesia. Health Policy Plan. 2021;36(7):1129-39.
11. Mulyanto J, Kringos DS, Kunst AE. Socioeconomic inequalities in healthcare utilisation in Indonesia: A comprehensive survey-based overview. BMJ Open. 2019;9(7):e026164.
12. World Population Dashboard. Indonesia Population 2025. United Nations Population Fund.
13. Cornish F. Genomics 101: What is the diagnostic odyssey? Genomics England. 15 Jan 2025.
Published
How to Cite
Issue
Section
License
Copyright (c) 2026 Ardita H. Pramudani, Ika Septiana Eryani, Agustini Utari, Tri Indah Winarni
This work is licensed under a Creative Commons Attribution 4.0 International License.
The Canadian Journal of Bioethics applies the Creative Commons Attribution 4.0 International License to all its publications. Authors therefore retain copyright of their publication, e.g., they can reuse their publication, link to it on their home page or institutional website, deposit a PDF in a public repository. However, the authors allow anyone to download, reuse, reprint, distribute, and/or copy their publication, so long as the original authors and source are cited.
_smaller.png){kind=logo}
