Approaches to governance of participant-led research: a qualitative case study

Authors: Azure Dominique Grant ^1 2, Gary Isaac Wolf ², Camille Nebeker ³

https://pubmed.ncbi.nlm.nih.gov/30944134/#full-view-affiliation-2

Affiliations

• ¹Neuroscience, University of California, Berkeley, Berkeley, California, USA.
• ²Quantified Self Labs, Berkeley, California, USA.
• ³Family Medicine and Public Health, School of Medicine, University of California, San Diego, La Jolla, California, USA.

Abstract

Objectives: Participant-led research (PLR) is a rapidly developing form of citizen science in which individuals can create personal and generalisable knowledge. Although PLR lacks a formal framework for ethical review, participants should not be excused from considering the ethical implications of their work. Therefore, a PLR cohort consisting of 24 self-trackers aimed to: (1) substitute research ethics board procedures with engagement in ethical reflection before and throughout the study and (2) draft principles to encourage further development of the governance and ethical review of PLR.

Grant AD, Wolf GI, Nebeker C. Approaches to governance of participant-led research: a qualitative case study. BMJ Open. 2019 Apr 2;9(4):e025633. doi: 10.1136/bmjopen-2018-025633. PMID: 30944134; PMCID: PMC6500204.

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