ArticleJournal of community genetics2018
Great expectations: patient perspectives and anticipated utility of non-diagnostic genomic-sequencing results.
Article in Journal of community genetics, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 18 papers, 3 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
18 citing papers in PubMed, 3 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
- Return of individual research results from genomic research: A systematic review of stakeholder perspectives.PloS one · 2021Pooled it
- A randomized study of digital versus genetic counselor return of actionable genetic research results to biobank participants (RESPECT3 study).BMC medical ethics · 2026Article
- Using the stages of change model to develop an understanding of caregiver intent for family behavior change following pediatric testing for genetic obesity: A qualitative analysis.Obesity pillars · 2025Article
- Parental perspectives regarding the return of genomic research results in neurodevelopmental disorders in South Africa: anticipated impact and preferences.Journal of community genetics · 2024Article
- Determining the utility of diagnostic genomics: a conceptual framework.Human genomics · 2023Review
- Public perceptions and attitudes of the national project of bio-big data: A nationwide survey in the Republic of Korea.Frontiers in genetics · 2023Article
- A personalized genomic results e-booklet, co-designed and pilot-tested by families.PEC innovation · 2022Article
- Perspectives and preferences regarding genomic secondary findings in underrepresented prenatal and pediatric populations: A mixed-methods approach.Genetics in medicine : official journal of the American College of Medical Genetics · 2022Article
- Preference for secondary findings in prenatal and pediatric exome sequencing.Prenatal diagnosis · 2022Article
- Evaluating the model of offering expanded genetic carrier screening to high school students within the Sydney Jewish community.Journal of community genetics · 2022Article
- Views on genomic research result delivery methods and informed consent: a review.Personalized medicine · 2021Review
- The ethics of genomic medicine: redefining values and norms in the UK and France.European journal of human genetics : EJHG · 2021Article
- Public engagement with genomic medicine: a summary of town hall discussions.Journal of community genetics · 2021Article
- Healthcare Utilization and Costs after Receiving a PositiveJournal of personalized medicine · 2020Article
- Genome sequencing in healthcare: understanding the UK general public's views and implications for clinical practice.European journal of human genetics : EJHG · 2020Article
- Direct-to-consumer genetic testing.BMJ (Clinical research ed.) · 2019Article
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
The management of secondary findings is a challenge to health-care providers relaying clinical genomic-sequencing results to patients. Understanding patients' expectations from non-diagnostic genomic sequencing could help guide this management. This study interviewed 14 individuals enrolled in the eMERGE (Electronic Medical Records and Genomics) study. Participants in eMERGE consent to undergo non-diagnostic genomic sequencing, receive results, and have results returned to their physicians. The interviews assessed expectations and intended use of results. The majority of interviewees were male (64%) and 43% identified as non-Caucasian. A unique theme identified was that many participants expressed uncertainty about the type of diseases they expected to receive results on, what results they wanted to learn about, and how they intended to use results. Participant uncertainty highlights the complex nature of deciding to undergo genomic testing and a deficiency in genomic knowledge. These results could help improve how genomic sequencing and secondary findings are discussed with patients.
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.