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Adapting Standards: Ethical Oversight of Participant-Led Health Research
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What this work says
Outgoing claims: the papers this work cites, builds on, or argues with.
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Patients Go Online Seeking Support, Practical Advice on Health Conditions
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Participant-centric initiatives: Tools to facilitate engagement in research
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inferredcites →https://doi.org/10.1017/cbo9780511550089.028openalex-snapshot
The Belmont Report: ethical principles and guidelines for the protection of human subjects of research
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The power of social networking in medicine
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Predictive, personalized, preventive, participatory (P4) cancer medicine
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inferredcites →https://doi.org/10.1080/08989621.2011.575032openalex-snapshot
Voting with their Mice: Personal Genome Testing and the “Participatory Turn” in Disease Research
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Department of Health, Education, and Welfare
inferredcites →https://doi.org/10.1111/j.1365-2796.2011.02351_1.xopenalex-snapshot
Viewpoint: Are the research ethics committees working in the best interests of participants in an increasingly globalized research environment?
inferredcites →https://doi.org/10.1111/j.1365-2796.2011.02351_2.xopenalex-snapshot
Viewpoint: A method to estimate the cost in lives of ethics board review of biomedical research
inferredcites →https://doi.org/10.1126/science.2686031openalex-snapshot
Optimistic Biases About Personal Risks
inferredcites →https://doi.org/10.1126/scitranslmed.3001857openalex-snapshot
Power to the People : Participant Ownership of Clinical Trial Data
inferredcites →https://doi.org/10.1126/scitranslmed.3002939openalex-snapshot
Disclosure of Clinical Trial Results When Product Development Is Abandoned
inferredcites →https://doi.org/10.1136/jme.2002.000166openalex-snapshot
Research ethics committees and paternalism
inferredcites →https://doi.org/10.1371/journal.pgen.1000965openalex-snapshot
Consent and Internet-Enabled Human Genomics
inferredcites →https://doi.org/10.1371/journal.pgen.1000993openalex-snapshot
Web-Based, Participant-Driven Studies Yield Novel Genetic Associations for Common Traits
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Why Current Publication Practices May Distort Science
inferredcites →https://doi.org/10.1371/journal.pmed.1001328openalex-snapshot
Research Conducted Using Data Obtained through Online Communities: Ethical Implications of Methodological Limitations
inferredcites →https://doi.org/10.1371/journal.pone.0023473openalex-snapshot
Efficient Replication of over 180 Genetic Associations with Self-Reported Medical Data
inferredcites →https://doi.org/10.2105/ajph.2012.300813openalex-snapshot
Ethical Issues in Health Research With Novel Online Sources
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Patient-reported Outcomes as a Source of Evidence in Off-Label Prescribing: Analysis of Data From PatientsLikeMe
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Crowdsourced Health Research Studies: An Important Emerging Complement to Clinical Trials in the Public Health Research Ecosystem
inferredcites →https://doi.org/10.3390/ijerph6020492openalex-snapshot
Emerging Patient-Driven Health Care Models: An Examination of Health Social Networks, Consumer Personalized Medicine and Quantified Self-Tracking
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Health 2050: The Realization of Personalized Medicine through Crowdsourcing, the Quantified Self, and the Participatory Biocitizen
inferredcites →https://doi.org/10.5860/choice.49-4420openalex-snapshot
Reinventing discovery: the new era of networked science
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Incoming claims: where this work appears in other papers’ reference lists and arguments.
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The Benefits of Online Health Communities
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The Essential Principle for Appropriate Data Policy of Citizen Science Projects: Correspondence for the Diverse and Transmutable Attributes of Participants
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Ethical Considerations of Patient-Funded Research for Multiple Sclerosis Therapeutics
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Crowdsourcing Advancements in Health Care Research
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Patient-Funded Trials: Opportunity or Liability?
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Commentary: Enlightened Democracy in Practice
inferred← citeshttps://doi.org/10.1038/nbt.2692openalex-snapshot
The ethics of participant-led biomedical research
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inferred← citeshttps://doi.org/10.1057/s41292-017-0043-6openalex-snapshot
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inferred← citeshttps://doi.org/10.1057/s41292-018-0125-0openalex-snapshot
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inferred← citeshttps://doi.org/10.1057/s41292-020-00208-2openalex-snapshot
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inferred← citeshttps://doi.org/10.1057/s41292-023-00301-2openalex-snapshot
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Toward an international definition of citizen science
inferred← citeshttps://doi.org/10.1080/15265161.2019.1619859openalex-snapshot
The Rise of Citizen Science in Health and Biomedical Research
inferred← citeshttps://doi.org/10.1080/21507740.2017.1288176openalex-snapshot
Crowdsourced tDCS Research: Feasible or Fanciful?
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Genes wide open: Data sharing and the social gradient of genomic privacy
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Ready to Put Metadata on the Post-2015 Development Agenda? Linking Data Publications to Responsible Innovation and Science Diplomacy
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Interrupting pathways to health inequities in citizen science health research
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Practical approaches to big data privacy over time
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Diverse sources of normativity in open science and their implications for ethical governance
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When two worlds collide: critical reflection on co-production
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Challenges with big data analytics in service supply chains in the UAE
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Innovating Openly: Researchers and Patients Turn to Crowdsourcing to Collaborate on Clinical Trials, Drug Discovery, and More
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Subjects no more: what happens when trial participants realize they hold the power?
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The next step in the patient revolution: patients initiating and leading research
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Approaches to governance of participant-led research: a qualitative case study
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Community-Partnered Research appraisal tool for conducting, reporting and assessing community-based research
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Meeting the needs of underserved populations: setting the agenda for more inclusive citizen science of medicine
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Participatory Genomic Research: Ethical Issues from the Bottom Up to the Top Down
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Tactics of material participation: How patients shape their engagement through e-health
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Ethical Considerations in the Conduct of Unregulated mHealth Research: Expert Perspectives
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Unregulated Health Research Using Mobile Devices: Ethical Considerations and Policy Recommendations
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Citizen science at the roots and as the future of forensic genetic genealogy
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User Perspectives of a Web-Based Data-Sharing Platform (Open Humans) on Ethical Oversight in Participant-Led Research: Protocol for a Quantitative Study
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inferred← citeshttps://doi.org/10.5334/cstp.202openalex-snapshot
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inferred← citeshttps://doi.org/10.5334/cstp.360openalex-snapshot
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inferred← citeshttps://doi.org/10.5334/cstp.537openalex-snapshot
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Civil society participation in the management of the common good: a case of ethics in biological resource centres
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