ArticleBMJ open2019
Approaches to governance of participant-led research: a qualitative case study.
Article in BMJ open, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 20 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
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Who cites it
20 citing papers in PubMed, 39 citations in OpenAlex.
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- Ten simple rules for open human health research.PLoS computational biology · 2020Article
- Return of Results in Participant-Driven Research: Learning from Transformative Research Models.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2020Article
- Using Self-Study and Peer-to-Peer Support to Change "Sick" Care to "Health" Care: The Patient Perspective.Frontiers in digital health · 2020Article
- Donors, authors, and owners: how is genomic citizen science addressing interests in research outputs?BMC medical ethics · 2019Article
- Open Humans: A platform for participant-centered research and personal data exploration.GigaScience · 2019Review
- Free-Living Humans Cross Cardiovascular Disease Risk Categories Due to Daily Rhythms in Cholesterol and Triglycerides.Journal of circadian rhythms · 2019Article
- Ethical Aspects of Personal Science for Persons with Parkinson's Disease: What Happens When Self-Tracking Goes from Selfcare to Publication?Journal of Parkinson's diseaseArticle
Corrections and comments
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Authors and funding
3 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectivesParticipant-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.
methodsA 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.
resultsData 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.
conclusionsProjects 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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.