ArticleGenetics in medicine : official journal of the American College of Medical Genetics2012
Public preferences regarding the return of individual genetic research results: findings from a qualitative focus group study.
Article in Genetics in medicine : official journal of the American College of Medical Genetics, 2012. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 138 papers, 7 of them syntheses that pooled it.
What it found
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Who cites it
138 citing papers in PubMed, 7 syntheses or guidelines pooled it.
- Systematic review of preferences for additional findings from genomic testing.European journal of human genetics : EJHG · 2026Pooled it
- Demographic Characteristics Associated With Perceptions of Personal Utility in Genetic and Genomic Testing: A Systematic Review.JAMA network open · 2023Pooled 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
- Psychological outcomes related to exome and genome sequencing result disclosure: a meta-analysis of seven Clinical Sequencing Exploratory Research (CSER) Consortium studies.Genetics in medicine : official journal of the American College of Medical Genetics · 2019Pooled it
- Personal utility in genomic testing: a systematic literature review.European journal of human genetics : EJHG · 2017Pooled it
- Stakeholders' perspectives on biobank-based genomic research: systematic review of the literature.European journal of human genetics : EJHG · 2015Pooled it
- An electronic review of clinical outcomes after return of actionable genetic research results from a health system research biobank.European journal of medical genetics · 2025Trial
- Enhancing Autonomy in Biobank Decisions: Too Much of a Good Thing?Journal of empirical research on human research ethics : JERHRE · 2018Trial
- A randomized study of digital versus genetic counselor return of actionable genetic research results to biobank participants (RESPECT3 study).BMC medical ethics · 2026Article
- Return of health research findings in Nigeria-perspective of potential research participants.BMC medical ethics · 2026Article
- Adolescent and Young Adult Perspectives on Receiving Pathogenic or Likely Pathogenic Results in a Prospective Genomic Screening Clinical Trial.Public health genomics · 2026Article
- Return of health research findings in Nigeria-perspective of potential research participants.Research square · 2025Article
- Decision-making and role preferences for receiving individual pharmacogenomic research results among participants at a Ugandan HIV research institute.BMC medical ethics · 2025Article
- How do study participants want to be informed about study results: Findings from a malaria trial in Cambodia, Ethiopia, Pakistan, and Indonesia.Journal of clinical and translational science · 2025Article
- Nephrologists' Views on a Workflow for Returning Genetic Results to Research Participants.Kidney international reports · 2024Article
- 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
- 'Research ethics · 2024Article
- Returning personal genetic information on susceptibility to arsenic toxicity to research participants in Bangladesh.Environmental research · 2024Article
- Article
78 more citing papers are in PubMed but not listed here.
Corrections and comments
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Authors and funding
4 authors.
Funding
Abstract
purposePeople are interested in receiving their individual research results in exchange for participating in genetic research. However, it is unclear whether the public understands the nature and limitations of these results and whether they would want information with unknown clinical utility.
methodsWe conducted 10 focus groups in three US cities to examine the types of results people would want and the perceived value of different types of individual research results.
resultsNearly all focus group participants said they would want at least some individual research results returned. Priority was placed on results that are well understood. Less important to participants were the magnitude of the risk conferred and actionability of the result. In addition to helping treat or prevent disease, participants identified several other potential health-related and personal reasons for wanting individual research results. Many believed that researchers have an obligation to return individual research results. Although most people would prefer to receive as much information as possible, many would accept the return of a limited set of results.
conclusionParticipants understood the nuances and limitations of individual research results. Researchers deciding the value of returning a given result should consider using a broader definition of clinical utility as well as the possible personal utility of the information.
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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.