ArticleJournal of bioethical inquiry2015
Why do people participate in epidemiological research?
Article in Journal of bioethical inquiry, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 27 papers, 1 of them a synthesis 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
27 citing papers in PubMed, 1 synthesis or guideline pooled it.
- A systematic literature review of health consumer attitudes towards secondary use and sharing of health administrative and clinical trial data: a focus on privacy, trust, and transparency.Systematic reviews · 2020Pooled it
- A multiple sclerosis lifestyle behavior online course: Qualitative analysis of participants' motivations, expectations and experiences.Frontiers in public health · 2022Trial
- Does the management of personal integrity information lead to differing participation rates and response patterns in mental health surveys with young adults? A three-armed methodological experiment.International journal of methods in psychiatric research · 2021Trial
- Widening participation in cognitive neuroscience: a mixed-methods study of age-related motivators, barriers and attitudes towards imaging methods.BMC medical research methodology · 2026Article
- Medicine and motherhood: a cross-sectional survey of the experiences of women doctors in the Republic of Ireland.BMC women's health · 2026Article
- Early Childhood Behavioral and Social-Emotional Development Among Asian Indian, Filipino, and Korean Families in the United States: A Pilot Study.Children (Basel, Switzerland) · 2026Article
- Facilitators of and barriers to participation in Long COVID research: A qualitative analysis.PloS one · 2026Article
- Strategies to build trust in the conduct of clinical trials: Stakeholders' views in a qualitative study in Ghana.PLOS global public health · 2025Article
- Establishing a Collaborative Genomic Repository for Adult Burn Survivors: A Burn Model System Feasibility Study.European burn journal · 2024Article
- Public attitudes towards personal health data sharing in long-term epidemiological research: a Citizen Science approach in the KORA study.BMC public health · 2024Article
- Reasons for participation in a child development study: Are cases with developmental diagnoses different from controls?Paediatric and perinatal epidemiology · 2022Article
- Why Vaccinate Against COVID-19? A Population-Based Survey in Switzerland.International journal of public health · 2022Article
- A systematic literature review of attitudes towards secondary use and sharing of health administrative and clinical trial data: a focus on consent.Systematic reviews · 2021Article
- Producers of Engineered Nanomaterials-What Motivates Company and Worker Participation in Biomonitoring Programs?International journal of environmental research and public health · 2021Article
- Adaptation of a mobile phone health survey for risk factors for noncommunicable diseases in Colombia: a qualitative study.Global health action · 2020Article
- Privacy Perceptions and Concerns in Image-Based Dietary Assessment Systems: Questionnaire-Based Study.JMIR human factors · 2020Article
- Asian Americans are less willing than other racial groups to participate in health research.Journal of clinical and translational science · 2019Article
- Maximizing Engagement in Mobile Health Studies: Lessons Learned and Future Directions.Rheumatic diseases clinics of North America · 2019Review
- Predicting participation of people with impaired vision in epidemiological studies.BMC ophthalmology · 2018Article
- Willingness to Participate in Longitudinal Research Among People with Chronic Pain Who Take Medical Cannabis: A Cross-Sectional Survey.Cannabis and cannabinoid research · 2018Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Many assumptions are made about public willingness to participate in epidemiological research, yet few empirical studies have been conducted to ascertain whether such assumptions are correct. Our qualitative study of the public and of expert stakeholders leads us to suggest that people are generally prepared to participate in epidemiological research, particularly if it is conducted by a trusted public institution such as a government health department, charity, or university. However, there is widespread community distrust of research conducted or sponsored by pharmaceutical companies. Individuals are prompted to take part if the study concerns an illness they or a family member or friend have personally experienced or if they believe the research will confer a widespread public benefit. Preferences vary about the mode of contact for the research to be conducted. Willingness to participate in telephone surveys has decreased in recent years, and this may be a consequence of an increase in calls to homes by telemarketers and market researchers. Participants also stressed the importance of knowing where their names and contact details were sourced and suggested that this information be available to prospective study participants as a matter of course in the first approach or letter. We provide valuable information to epidemiologists in designing studies.
Indexed as
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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.