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

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.

Methods

A qualitative case study method was used to analyse the ethical reflection process. Participants discussed study risks, risk management strategies and benefits pre-project, during a

SUBMITTER: Grant AD 

PROVIDER: S-EPMC6500204 | biostudies-literature | 2019 Apr

REPOSITORIES: biostudies-literature