SynthesisJournal of medical Internet research2017
Attitudes Toward the Ethics of Research Using Social Media: A Systematic Review.
Synthesis in Journal of medical Internet research, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 65 papers, 4 of them syntheses that pooled it.
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
65 citing papers in PubMed, 4 syntheses or guidelines pooled it.
- A systematic mapping review of qualitative research in paediatric otolaryngology.The Journal of laryngology and otology · 2026Pooled it
- Ethical and Methodological Considerations of Twitter Data for Public Health Research: Systematic Review.Journal of medical Internet research · 2022Pooled it
- Barriers to and Facilitators of User Engagement With Digital Mental Health Interventions: Systematic Review.Journal of medical Internet research · 2021Pooled it
- Toward an Ethical Framework for the Text Mining of Social Media for Health Research: A Systematic Review.Frontiers in digital health · 2020Pooled it
- The Ethical Implications of Using Social Media to Engage and Retain Justice-Involved Youth in Behavioral Health Research.Journal of empirical research on human research ethics : JERHRE · 2021Trial
- Large Language Model-Based Analysis of Statin Therapy Discussions and Sentiment on Social Media: Cross-Sectional Observational Study.Journal of medical Internet research · 2026Observational
- Three pillars for digital health assessment in LMICs: a mini review of technology benchmarking, digital health literacy, and social media listening.Frontiers in public health · 2026Review
- AAPM WGTEACH Report 366: Best practices in the teaching and mentoring of medical physics.Journal of applied clinical medical physics · 2025Article
- Factors that affect clinical youth engagement in digital mental health research: a qualitative sub-study nested within a prospective cohort study.BMC medical research methodology · 2025Observational
- Exploring the Views of Young People, Including Those With a History of Self-Harm, on the Use of Their Routinely Generated Data for Mental Health Research: Web-Based Cross-Sectional Survey Study.JMIR mental health · 2025Article
- Patient Information Needs and Decision-Making Before a Cardiac Implantable Electronic Device: A Qualitative Study Utilizing Social Media Data.Journal of clinical psychology in medical settings · 2025Article
- Attention-deficit hyperactivity disorder medication shortage in the United States: a qualitative assessment of Reddit posts.Frontiers in pharmacology · 2025Article
- AI for Analyzing Mental Health Disorders Among Social Media Users: Quarter-Century Narrative Review of Progress and Challenges.Journal of medical Internet research · 2024Review
- Article
- Reporting of Ethical Considerations in Qualitative Research Utilizing Social Media Data on Public Health Care: Scoping Review.Journal of medical Internet research · 2024Article
- Toward Fairness, Accountability, Transparency, and Ethics in AI for Social Media and Health Care: Scoping Review.JMIR medical informatics · 2024Article
- Patient listening on social media for patient-focused drug development: a synthesis of considerations from patients, industry and regulators.Frontiers in medicine · 2024Article
- Ethical guidance for conducting health research with online communities: A scoping review of existing guidance.PloS one · 2024Article
- Ethical and Information Governance Considerations for Promoting Digital Social Interventions in Primary Care.Journal of medical Internet research · 2023Article
- COVID-19 Anti-Vaccine Sentiments in Malaysia: Narratives of Comments from Facebook Post.Vaccines · 2023Article
5 more citing papers are in PubMed but not listed here.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors.
Funding
Abstract
backgroundAlthough primarily used for social networking and often used for social support and dissemination, data on social media platforms are increasingly being used to facilitate research. However, the ethical challenges in conducting social media research remain of great concern. Although much debated in the literature, it is the views of the public that are most pertinent to inform future practice.
objectiveThe aim of our study was to ascertain attitudes on the ethical considerations of using social media as a data source for research as expressed by social media users and researchers.
methodsA systematic review was conducted, wherein 16 databases and 2 Internet search engines were searched in addition to handsearching, reference checking, citation searching, and contacting authors and experts. Studies that conducted any qualitative methods to collect data on attitudes on the ethical implications of research using social media were included. Quality assessment was conducted using the quality of reporting tool (QuaRT) and findings analyzed using inductive thematic synthesis.
resultsIn total, 17 studies met the inclusion criteria. Attitudes varied from overly positive with people expressing the views about the essential nature of such research for the public good, to very concerned with views that social media research should not happen. Underlying reasons for this variation related to issues such as the purpose and quality of the research, the researcher affiliation, and the potential harms. The methods used to conduct the research were also important. Many respondents were positive about social media research while adding caveats such as the need for informed consent or use restricted to public platforms only.
conclusionsMany conflicting issues contribute to the complexity of good ethical practice in social media research. However, this should not deter researchers from conducting social media research. Each Internet research project requires an individual assessment of its own ethical issues. Guidelines on ethical conduct should be based on current evidence and standardized to avoid discrepancies between, and duplication across, different institutions, taking into consideration different jurisdictions.
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.