close
Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2021;11(4):1927-1933.
doi: 10.3233/JPD-212647.

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

Sara Riggare  1 , Maria Hägglund  1 , Annelien L Bredenoord  2 , Martijn de Groot  3 , Bastiaan R Bloem  4
Affiliations

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

Sara Riggare et al. J Parkinsons Dis. 2021.

Abstract

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.

Keywords: Parkinson’s disease; ethics; patient empowerment; remote monitoring; self-tracking; selfcare.

PubMed Disclaimer

Conflict of interest statement

The authors have no conflicts of interest to report.

References

    1. Okun MS (2017) Management of Parkinson Disease in 2017: Personalized approaches for patient-specific needs, JAMA 318, 791–792. - PubMed
    1. Dorsey ER, Vlaanderen FP, Engelen LJ, Kieburtz K, Zhu W, Biglan KM, Faber MJ, Bloem BR (2016) Moving Parkinson care to the home, Mov Disord 31, 1258–1262. - PMC - PubMed
    1. Hulbert SM, Goodwin VA (2020) ‘Mind the gap’ —a scoping review of long term, physical, self-management in Parkinson’s, Physiotherapy 107, 88–99. - PubMed
    1. Wicks P (2018) Patient, study thyself, BMC Med 16, 10–12. - PMC - PubMed
    1. Emanuel EJ, Wendler D, Grady C (2000) What makes clinical research ethical? JAMA 283, 2701–2711. - PubMed

LinkOut - more resources