Ethical Aspects of Personal Science for Persons with Parkinson’s Disease: What Happens When Self-Tracking Goes from Selfcare to Publication?
| العنوان: | Ethical Aspects of Personal Science for Persons with Parkinson’s Disease: What Happens When Self-Tracking Goes from Selfcare to Publication? |
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| المؤلفون: | Riggare, Sara, Hägglund, Maria, Lektor, 1975, Bredenoord, Annelien L., de Groot, Martijn, Bloem, Bastiaan R. |
| المصدر: | Journal of Parkinson's Disease. 11(4):1927-1933 |
| مصطلحات موضوعية: | Parkinson’s disease, self-tracking, ethics, remote monitoring, selfcare, patient empowerment, Medical Informatics, Medicinsk informatik |
| الوصف: | Using Parkinson’s disease as an exemplary chronic condition, this Commentary discusses ethical aspects of using self-tracking for personal science, as compared to using self-tracking in the context of conducting clinical research on groups of study participants. Conventional group-based clinical research aims to find generalisable answers to clinical or public health questions. The aim of personal science is different: to find meaningful answers that matter first and foremost to an individual with a particular health challenge. In the case of personal science, the researcher and the participant are one and the same, which means that specific ethical issues may arise, such as the need to protect the participant against self-harm. To allow patient-led research in the form of personal science in the Parkinson field to evolve further, the development of a specific ethical framework for self-tracking for personal science is needed. |
| وصف الملف: | electronic |
| URL الوصول: | https://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-445292 https://doi.org/10.3233/JPD-212647 https://uu.diva-portal.org/smash/get/diva2:1564660/FULLTEXT01.pdf |
| قاعدة البيانات: | SwePub |
| تدمد: | 18777171 1877718X |
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| DOI: | 10.3233/JPD-212647 |