ArticleHealth affairs (Project Hope)2019
Understanding What Information Is Valued By Research Participants, And Why.
Article in Health affairs (Project Hope), 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT05277116 (The Electronic Medical Records and GEnomics), which is not on this map. Cited by 59 papers, 2 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.
The Electronic Medical Records and GEnomics (eMERGE) Network Genomic Risk Assessment
Who cites it
59 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Attitudes and beliefs regarding race-targeted genetic testing of Black people: A systematic review.Journal of genetic counseling · 2023Pooled it
- Return of individual research results from genomic research: A systematic review of stakeholder perspectives.PloS one · 2021Pooled it
- Trial
- 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
- Reciprocity in research: Participant views on return of results in the WATCH-PD qualitative study.Journal of Parkinson's disease · 2026Article
- Autism and ADHD Strengths and Needs in a Nutshell - Parental Evaluation of a Digital ICF-Based Assessment Summary Report.Journal of autism and developmental disorders · 2026Article
- "But Then They Don't Use the Same Money to Give Us Services": Attitudes and Perspectives on Dementia Care Community-Based Research in Hispanic Communities.Journal of applied gerontology : the official journal of the Southern Gerontological Society · 2026Article
- Recommended approaches to sharing individual research results in Alzheimer's disease research: A multidisciplinary expert Delphi consensus.Journal of Alzheimer's disease : JAD · 2025Article
- 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
- Developing Requirements for a Standardized System to Return Individual Research Results Back to Study Participants: Narrative Review.Interactive journal of medical research · 2025Review
- 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
- Ten simple rules for research with humans.PLoS computational biology · 2025Article
- Research participants and stakeholders' views on feedback of genetic research findings: a qualitative study of the H3Africa Kidney Disease Research Network in Ghana.BMC nephrology · 2025Article
- Enrollment in Alzheimer's disease-focused research registries: altruistic and egocentric motivations.Psychology, health & medicine · 2025Article
- Returning Individual-Level Urgent or Emergent Research Results to Participants: The Project Baseline Health Study Experience.American journal of medicine open · 2025Article
- Participant Evaluation of Blockchain-Enhanced Women's Health Research Apps: Mixed Methods Experimental Study.JMIR mHealth and uHealth · 2025Article
- Principles and practices of returning individual research results to participants in large studies of pregnancy and childhood.American journal of epidemiology · 2025Article
- Developing a genetic return of results service core.Journal of clinical and translational science · 2025Article
- Communicating research findings as a return of value to All of Us Research Program participants: insights from staff at Federally Qualified Health Centers.Journal of the American Medical Informatics Association : JAMIA · 2024Article
- Returning value to communities from the All of Us Research Program through innovative approaches for data use, analysis, dissemination, and research capacity building.Journal of the American Medical Informatics Association : JAMIA · 2024Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors.
Funding
Abstract
There is growing public demand that research participants receive all of their results, regardless of whether clinical action is indicated. Instead of the standard practice of returning only actionable results, we propose a reconceptualization called "return of value" to encompass the varied ways in which research participants value specific results and more general information they receive beyond actionable results. Our proposal is supported by a national survey of a diverse sample, which found that receiving research results would be valuable to most (78.5 percent) and would make them more likely to trust researchers (70.3 percent). Respondents highly valued results revealing genetic effects on medication response and predicting disease risk, as well as information about nearby clinical trials and updates on how their data were used. The information most valued varied by education, race/ethnicity, and age. Policies are needed to enable return of information in ways that recognize participants' differing informational needs and values.
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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.