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Approaches to governance of participant-led research: a qualitative case study
  1. Azure Dominique Grant1,2,
  2. Gary Isaac Wolf2,
  3. Camille Nebeker3
  1. 1Neuroscience, University of California, Berkeley, Berkeley, California, USA
  2. 2Quantified Self Labs, Berkeley, California, USA
  3. 3Family Medicine and Public Health, School of Medicine, University of California, San Diego, La Jolla, California, USA
  1. Correspondence to Dr Camille Nebeker; nebeker{at}eng.ucsd.edu

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 series of weekly webinars, via individual meetings with the participant-organisers, and during semi-structured interviews at project completion. Themes arising from discussions and interviews were used to draft prospective principles to guide PLR.

Results Data control, aggregation and identifiability were the most common risks identified. These were addressed by a commitment to transparency among all participants and by establishing participant control via self-collection and self-management of data. Group discussions and resources (eg, assistance with experimental design and data analysis) were the most commonly referenced benefits of participation. Additional benefits included greater understanding of one’s physiology and greater ability to structure an experiment. Nine principles were constructed to encourage further development of ethical PLR practices. All participants expressed interest in participating in future PLR.

Conclusions Projects involving a small number of participants can sustain engagement in ethical reflection among participants and participant-organisers. PLR that prioritises transparency, participant control of data and ongoing risk-to-benefit evaluation is compatible with the principles that underlie traditional ethical review of health research, while being appropriate for a context in which citizen scientists play the central role.

  • public involvement
  • research ethics
  • informed consent
  • citizen science
  • participant-led research

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

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Footnotes

  • Contributors AG led the project, which is the case under analysis in this manuscript, conducted all interviews, contributed to data analysis with CN, and led writing and editing of the manuscript. GW contributed to conception and organisation of the project and to writing and editing of the manuscript. CN contributed to the conception and guidance of the ethical reflection process, data analysis with AG, and writing and editing of the manuscript.

  • Funding Funding for the project was provided by a grant from Amgen Inc. to Quantified Self Labs. The company did not contribute to the research question(s), methods, analysis or interpretation. Amgen Inc. did not have access to data obtained via this project and has not had the opportunity to review this paper prior to its submission for peer-reviewed publication.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement As interview transcripts contain personally identifying information that cannot easily be removed while preserving the content of the interview (e.g., discussion of individuals’ health condition in the context of their experiments, discussion of the death of a family member’s impact on trying to complete a project, descriptions of other participants in the context of their projects), transcripts will not be shared.

  • Patient consent for publication Not required.

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