Ethical Aspects of Personal Science for Persons with Parkinson’s Disease: What Happens When Self-Tracking Goes from Selfcare to Publication?

Ethical Aspects of Personal Science for Persons with Parkinson’s Disease : What Happens When Self-Tracking Goes from Selfcare to Publication?

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.

Hägglund, Maria,Lektor,1975-Uppsala universitet,Hälsovetenskap och e-hälsa(Swepub:uu)mha05791 (author)
Bredenoord, Annelien L.University Medical Center Utrecht, Utrecht University, Department of Medical Humanities, Utrecht, The Netherlands (author)
de Groot, MartijnRadboud University Medical Centre, Health Innovation Labs, Nijmegen, The Netherlands (author)
Bloem, Bastiaan R.Radboud University Medical Centre, Donders Institute for Brain, Cognition and Behaviour, Department of Neurology, Centre of Expertise for Parkinson & Movement Disorders, Nijmegen, The Netherlands (author)
Uppsala universitetHälsovetenskap och e-hälsa (creator_code:org_t)

By the author/editor: Riggare, Sara; Hägglund, Maria, ...; Bredenoord, Anne ...; de Groot, Martij ...; Bloem, Bastiaan ...

About the subject

MEDICAL AND HEALTH SCIENCES: MEDICAL AND HEAL ...; and Health Sciences; and Medical Ethics

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