ArticlePloS one2021
Return of individual research results: What do participants prefer and expect?
Article in PloS one, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 18 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
18 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Attitudes and beliefs regarding race-targeted genetic testing of Black people: A systematic review.Journal of genetic counseling · 2023Pooled it
- Return of Research Results to Participants in Longitudinal Cohort Studies in Health Research: Findings From 24 Cohorts of the Amsterdam Cohort Hub.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Cross-disciplinary methodologies for whole-person research - insights from EMPOWER2024.Npj imaging · 2026Article
- Preferences of research participants with experience receiving individual results for future return of results.Journal of clinical and translational science · 2026Article
- The Impact of Research Results Feedback on the Lived Experiences of Elderly Participants in the DIMAMO Health Demographic Site: A Case of AWI-Gen Participants.International journal of environmental research and public health · 2025Article
- The Use of Automated Digital Data in Speech, Language, and Hearing Research: Confronting a New Ethical Landscape.Journal of speech, language, and hearing research : JSLHR · 2025Article
- Optimizing wrist-worn wearable compliance with insights from two Parkinson's disease cohort studies.NPJ Parkinson's disease · 2025Article
- Principles and practices of returning individual research results to participants in large studies of pregnancy and childhood.American journal of epidemiology · 2025Article
- Returning individual wearable sensor results to participants: perspectives on challenges and lessons learned.Frontiers in digital health · 2025Article
- All of Us participant perspectives on the return of value in research.Genetics in medicine : official journal of the American College of Medical Genetics · 2024Article
- Perceptions of patient-reported outcome data access and sharing among patients with heart failure: ethical implications for research.European journal of cardiovascular nursing · 2024Article
- Return of individual research results to participants with and at risk for Parkinson's disease.Journal of clinical and translational science · 2024Article
- Returning individual research results to participants: Values, preferences, and expectations.Journal of clinical and translational science · 2024Article
- Return of Results in Genomic Research Using Large-Scale or Whole Genome Sequencing: Toward a New Normal.Annual review of genomics and human genetics · 2023Review
- Return of Individual Research Results: Participant Perspectives in a Longitudinal Community-Based Sample.Journal of empirical research on human research ethics : JERHRE · 2023Article
- Returning study results to research participants: Data access, format, and sharing preferences.International journal of medical informatics · 2023Article
- Multi-dimensional characterization of prediabetes in the Project Baseline Health Study.Cardiovascular diabetology · 2022Observational
- Ethical Considerations in Clinical Trials for Disorders of Consciousness.Brain sciences · 2022Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
20 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Newer data platforms offer increased opportunity to share multidimensional health data with research participants, but the preferences of participants for which data to receive and how is evolving. Our objective is to describe the preferences and expectations of participants for the return of individual research results within Project Baseline Health Study (PBHS). The PBHS is an ongoing, multicenter, longitudinal cohort study with data from four initial enrollment sites. PBHS participants are recruited from the general population along with groups enriched for heart disease and cancer disease risk. Cross-sectional data on return of results were collected in 2017-2018 from an (1) in-person enrollment survey (n = 1,890), (2) benchmark online survey (n = 1,059), and (3) participant interviews (n = 21). The main outcomes included (1) preferences for type of information to be added next to returned results, (2) participant plans for sharing returned results with a non-study clinician, and (3) choice to opt-out of receiving genetic results. Results were compared by sociodemographic characteristics. Enrollment and benchmark survey respondents were 57.1% and 53.5% female, and 60.0% and 66.2% white, respectively. Participants preferred the following data types be added to returned results in the future: genetics (29.9%), heart imaging, (16.4%), study watch (15.8%), and microbiome (13.3%). Older adults (OR 0.60, 95% CI: 0.41-0.87) were less likely to want their genetic results returned next. Forty percent of participants reported that they would not share all returned results with their non-study clinicians. Black (OR 0.64, 95% CI 0.43-0.95) and Asian (OR 0.47, 95% CI 0.30-0.73) participants were less likely, and older participants more likely (OR 1.45-1.61), to plan to share all results with their clinician than their counterparts. At enrollment, 5.8% of participants opted out of receiving their genetics results. The study showed that substantial heterogeneity existed in participant's preferences and expectations for return of results, and variations were related to sociodemographic characteristics.
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.