โก Quick Summary
This narrative review explores the ethical challenges faced by individuals with rare diseases in the context of digital health technologies. It emphasizes the need for integrating the lived experiences of these individuals into new technologies to enhance health outcomes.
๐ Key Details
- ๐ Focus: Rare diseases and digital health
- ๐งฉ Key Concepts: Ethical considerations, public health strategies, and digital health opportunities
- โ๏ธ Philosophical Insight: Kant’s notion of noumena regarding the lived experiences of individuals
- ๐ Data Comparison: Manual data points vs. advanced AI systems
๐ Key Takeaways
- ๐ Digital health technologies can improve data sharing among care providers and patients.
- ๐ Current data collection methods often fail to represent the experiences of those with rare conditions.
- ๐ก Ethical challenges arise in ensuring that technology meets the needs of individuals with rare diseases.
- ๐ค AI systems offer advanced capabilities for data analysis but must be aligned with patient experiences.
- ๐ฃ๏ธ Patient voices are crucial in shaping effective digital health solutions.
- ๐ Publication: Front Digit Health, 2025; 7:1539841.
- ๐ DOI: 10.3389/fdgth.2025.1539841
๐ Background
Rare diseases affect a small percentage of the population, yet they pose significant challenges for healthcare systems. The integration of digital health technologies presents an opportunity to enhance the quality of care for these individuals. However, the ethical implications of such technologies must be carefully considered to ensure that they truly benefit those affected.
๐๏ธ Study
This narrative review synthesizes existing literature on rare diseases, public health strategies, and the role of digital health technologies. It highlights the importance of capturing the lived experiences of individuals with rare conditions, which are often overlooked in the digital landscape. The authors argue for a more inclusive approach to data collection and technology development.
๐ Results
The review illustrates the disparity between traditional data collection methods and the capabilities of advanced artificial intelligence systems. By comparing these approaches, the authors emphasize the need for a shift towards more comprehensive data points that reflect the realities of living with rare diseases.
๐ Impact and Implications
The findings of this review have significant implications for the future of healthcare for individuals with rare diseases. By embedding the needs and experiences of patients into digital health technologies, we can create solutions that are not only effective but also ethically sound. This approach could lead to improved health outcomes and a better quality of life for those affected by rare conditions.
๐ฎ Conclusion
As we advance into the digital health era, it is crucial to prioritize the voices of individuals with rare diseases. This review underscores the pressing need for ethical considerations in technology development, ensuring that innovations truly serve the needs of those they aim to help. The integration of patient experiences into digital health solutions is not just beneficial; it is essential for meaningful progress.
๐ฌ Your comments
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Rare diseases: ethical challenges in the era of digital health.
Abstract
To improve the health and wellbeing outcomes of people with rare conditions, it is necessary to integrate all aspects of health and wellbeing. Digital health technologies can appropriately capture and share harmonised data between care providers and the individuals concerned. The quality of digital health is dependent on defined data points reflecting the actual medical and societal situation and register changes when new diagnostics or therapies become available. The life experiences of individuals living with a condition, individually or as a group, are underrepresented in the digitalising world. This narrative review addresses rare conditions as an entity, public health strategies, digital health opportunities, and ethical considerations. The challenge is illustrated by comparing data gathered by manually selected data points with advanced artificial intelligence systems. In this new digital era, we consider the philosopher Kant’s notion of noumena: “Only individuals with rare disabling conditions can genuinely convey the reality of living with those conditions”. In conclusion, there is a pressing demand to embed the needs and experiences of people in all new technologies.
Author: [‘Siderius L’, ‘Perera SD’, ‘Jankauskaite L’, ‘Bhattacharya A’, ‘Gonรงalves P’]
Journal: Front Digit Health
Citation: Siderius L, et al. Rare diseases: ethical challenges in the era of digital health. Rare diseases: ethical challenges in the era of digital health. 2025; 7:1539841. doi: 10.3389/fdgth.2025.1539841