ArticlePLoS medicine2013
Adapting standards: ethical oversight of participant-led health research.
Article in PLoS medicine, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 42 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
42 citing papers in PubMed.
- Exploring Ethics: Understanding the Role of Privacy Policies and Institutional Review Boards in Digital Health Companies.Journal of medical Internet research · 2025Article
- Clinical challenges and patient experiences in early-onset colorectal cancer: insights from seven European countries.BMC gastroenterology · 2025Article
- Diverse sources of normativity in open science and their implications for ethical governance.Royal Society open science · 2024Article
- Community-Partnered Research appraisal tool for conducting, reporting and assessing community-based research.BMJ open · 2024Review
- Navigating biosafety concerns within COVID-19 do-it-yourself (DIY) science: an ethnographic and interview study.BioSocieties · 2023Article
- The nexus of social alliances and diverse moral domains: a bedrock for participatory clinical research.Frontiers in medicine · 2023Article
- Core values of genomic citizen science: results from a qualitative interview study.BioSocieties · 2022Article
- An Ethics Framework for Evaluating Ownership Practices in Biomedical Citizen Science.Citizen science : theory and practice · 2022Article
- Ethics of AI in Pathology: Current Paradigms and Emerging Issues.The American journal of pathology · 2021Review
- A best-worst scaling experiment to prioritize concern about ethical issues in citizen science reveals heterogeneity on people-level v. data-level issues.Scientific reports · 2021Observational
- "A cohort of pirate ships": biomedical citizen scientists' attitudes toward ethical oversight.Citizen science : theory and practice · 2021Article
- Ultradian rhythms in heart rate variability and distal body temperature anticipate onset of the luteinizing hormone surge.Scientific reports · 2020Article
- Non-Hispanic White Mothers' Willingness to Share Personal Health Data With Researchers: Survey Results From an Opt-in Panel.Journal of participatory medicine · 2020Article
- Ethical Considerations in the Conduct of Unregulated mHealth Research: Expert Perspectives.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 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
- "Hunting Down My Son's Killer": New Roles of Patients in Treatment Discovery and Ethical Uncertainty.Journal of bioethical inquiry · 2020Article
- Meeting the needs of underserved populations: setting the agenda for more inclusive citizen science of medicine.Journal of medical ethics · 2019Article
- Taking patient involvement seriously: a critical ethical analysis of participatory approaches in data-intensive medical research.BMC medical informatics and decision making · 2019Article
- Opinion: Toward an international definition of citizen science.Proceedings of the National Academy of Sciences of the United States of America · 2019Article
- Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
As participant-led health research increases, Effy Vayena and and John Tasioulas examine what ethical questions are raised, and what types of standards need to be developed for appropriate ethical oversight for participant-led research projects.
Indexed as
Identifiers
What OpenQuestion holds
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.