ArticleClinical genetics2012
Effects of informed consent for individual genome sequencing on relevant knowledge.
Article in Clinical genetics, 2012. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to 4 registered trials, which are not on this map. Cited by 79 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 MedSeq Project Pilot Study: Integrating Whole Genome Sequencing Into the Practice of Clinical Medicine
Is it Feasible?: Self-Affirmation for Hereditary Breast and Ovarian Cancer Genetic Counseling
The MilSeq Project: Enabling Personalized Medicine Through Exome Sequencing in the U.S. Air Force
Reporting Adult-Onset Genomic Results to Pediatric Biobank Participants and Parents
Who cites it
79 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Parents' understanding of genome and exome sequencing for pediatric health conditions: a systematic review.European journal of human genetics : EJHG · 2022Pooled it
- Citizens' Attitudes, Knowledge, and Educational Needs in the Field of Omics Sciences: A Systematic Literature Review.Frontiers in genetics · 2020Pooled it
- Patient perspectives on testing for clonal hematopoiesis of indeterminate potential.Blood advances · 2022Trial
- Preferences for in-person disclosure: Patients declining telephone disclosure characteristics and outcomes in the multicenter Communication Of GENetic Test Results by Telephone study.Clinical genetics · 2019Trial
- A randomized controlled study of a consent intervention for participating in an NIH genome sequencing study.European journal of human genetics : EJHG · 2018Trial
- Web Platform vs In-Person Genetic Counselor for Return of Carrier Results From Exome Sequencing: A Randomized Clinical Trial.JAMA internal medicine · 2018Trial
- Interactive multimedia consent for biobanking: a randomized trial.Genetics in medicine : official journal of the American College of Medical Genetics · 2016Trial
- The MedSeq Project: a randomized trial of integrating whole genome sequencing into clinical medicine.Trials · 2014Trial
- When bins blur: Patient perspectives on categories of results from clinical whole genome sequencing.AJOB empirical bioethicsTrial
- Elective genomic sequencing for adults in research, clinical and commercial contexts.BMC medical genomics · 2026Article
- Elective genomic sequencing for adults in research, clinical and commercial contexts.medRxiv : the preprint server for health sciences · 2026Article
- A roadmap for genome projects to foster psychosocial and economic evidence to further policy and practice.Communications medicine · 2025Review
- Healthcare professionals' experiences with expanded noninvasive prenatal screening: challenges and solutions.Journal of community genetics · 2025Article
- Associations between subjective social status and predictors of interest in genetic testing among women diagnosed with breast cancer at a young age.Cancer causes & control : CCC · 2024Article
- Genetics Adviser: The development and usability testing of a new patient digital health application to support clinical genomic testing.Genetics in medicine open · 2024Article
- Great expectations: patients' preferences for clinically significant results from genomic sequencing.Human genetics · 2023Article
- Development and validation of the Vanderbilt PRS-KS, an instrument to quantify polygenic risk score knowledge.Genetics in medicine open · 2023Article
- Understanding changes in genetic literacy over time and in genetic research participants.American journal of human genetics · 2022Article
- Patient and Provider Perspectives on Enrollment in Precision Oncology Research: Qualitative Ethical Analysis.JMIR cancer · 2022Article
- Article
19 more citing papers are in PubMed but not listed here.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
8 authors.
Funding
Abstract
Increasing availability of individual genomic information suggests that patients will need knowledge about genome sequencing to make informed decisions, but prior research is limited. In this study, we examined genome sequencing knowledge before and after informed consent among 311 participants enrolled in the ClinSeq™ sequencing study. An exploratory factor analysis of knowledge items yielded two factors (sequencing limitations knowledge; sequencing benefits knowledge). In multivariable analysis, high pre-consent sequencing limitations knowledge scores were significantly related to education [odds ratio (OR): 8.7, 95% confidence interval (CI): 2.45-31.10 for post-graduate education, and OR: 3.9; 95% CI: 1.05, 14.61 for college degree compared with less than college degree] and race/ethnicity (OR: 2.4, 95% CI: 1.09, 5.38 for non-Hispanic Whites compared with other racial/ethnic groups). Mean values increased significantly between pre- and post-consent for the sequencing limitations knowledge subscale (6.9-7.7, p < 0.0001) and sequencing benefits knowledge subscale (7.0-7.5, p < 0.0001); increase in knowledge did not differ by sociodemographic characteristics. This study highlights gaps in genome sequencing knowledge and underscores the need to target educational efforts toward participants with less education or from minority racial/ethnic groups. The informed consent process improved genome sequencing knowledge. Future studies could examine how genome sequencing knowledge influences informed decision making.
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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.