ArticleJournal of genetic counseling2014
Personalized genomic results: analysis of informational needs.
Article in Journal of genetic counseling, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 21 papers.
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
21 citing papers in PubMed.
- Outcomes of a Randomized Controlled Trial of Genomic Counseling for Patients Receiving Personalized and Actionable Complex Disease Reports.Journal of genetic counseling · 2017Trial
- How Has the Rise of Direct-To-Consumer Genetic Testing Impacted Genetic Counselling Practice? A Scoping Review.Clinical genetics · 2026Article
- The impact of language discordance on genetic counselors' ability to establish a working alliance with patients.Journal of genetic counseling · 2025Article
- "They're Not Going to Do Nothing for Me": Research Participants' Attitudes towards Elective Genetic Counseling.Journal of personalized medicine · 2020Article
- Pharmacogenomic (PGx) Counseling: Exploring Participant Questions about PGx Test Results.Journal of personalized medicine · 2020Article
- Neutral, Negative, or Negligible? Changes in Patient Perceptions of Disease Risk Following Receipt of a Negative Genomic Screening Result.Journal of personalized medicine · 2020Article
- Operationalizing the Reciprocal Engagement Model of Genetic Counseling Practice: a Framework for the Scalable Delivery of Genomic Counseling and Testing.Journal of genetic counseling · 2018Article
- Early Outcome Data Assessing Utility of a Post-Test Genomic Counseling Framework for the Scalable Delivery of Precision Health.Journal of personalized medicine · 2018Article
- Development and Evaluation of a Telephone Communication Protocol for the Delivery of Personalized Melanoma Genomic Risk to the General Population.Journal of genetic counseling · 2018Article
- Preferences for learning different types of genome sequencing results among young breast cancer patients: Role of psychological and clinical factors.Translational behavioral medicine · 2018Article
- Counselees' Perspectives of Genomic Counseling Following Online Receipt of Multiple Actionable Complex Disease and Pharmacogenomic Results: a Qualitative Research Study.Journal of genetic counseling · 2017Article
- Information Topics of Greatest Interest for Return of Genome Sequencing Results among Women Diagnosed with Breast Cancer at a Young Age.Journal of genetic counseling · 2017Article
- Precision Military Medicine: Conducting a multi-site clinical utility study of genomic and lifestyle risk factors in the United States Air Force.NPJ genomic medicine · 2017Article
- Challenges in Translating GWAS Results to Clinical Care.International journal of molecular sciences · 2016Article
- An expanded pharmacogenomics warfarin dosing table with utility in generalised dosing guidance.Thrombosis and haemostasis · 2016Observational
- Acceptability of, and Information Needs Regarding, Next-Generation Sequencing in People Tested for Hereditary Cancer: A Qualitative Study.Journal of genetic counseling · 2016Article
- Genetic Knowledge Among Participants in the Coriell Personalized Medicine Collaborative.Journal of genetic counseling · 2016Article
- Parents' Experience with Pediatric Microarray: Transferrable Lessons in the Era of Genomic Counseling.Journal of genetic counseling · 2016Article
- How can psychological science inform research about genetic counseling for clinical genomic sequencing?Journal of genetic counseling · 2015Article
- Consumer familiarity, perspectives and expected value of personalized medicine with a focus on applications in oncology.Personalized medicine · 2015Article
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
No grant is acknowledged in the PubMed record.
Abstract
Use of genomic information in healthcare is increasing; however data on the needs of consumers of genomic information is limited. The Coriell Personalized Medicine Collaborative (CPMC) is a longitudinal study investigating the utility of personalized medicine. Participants receive results reflecting risk of common complex conditions and drug-gene pairs deemed actionable by an external review board. To explore the needs of individuals receiving genomic information we reviewed all genetic counseling sessions with CPMC participants. A retrospective qualitative review of notes from 157 genetic counseling inquiries was conducted. Notes were coded for salient themes. Five primary themes; "understanding risk", "basic genetics", "complex disease genetics", "what do I do now?" and "other" were identified. Further review revealed that participants had difficulty with basic genetic concepts, confused relative and absolute risks, and attributed too high a risk burden to individual single nucleotide polymorphisms (SNPs). Despite these hurdles, counseled participants recognized that behavior changes could potentially mitigate risk and there were few comments alluding to an overly deterministic or fatalistic interpretation of results. Participants appeared to recognize the multifactorial nature of the diseases for which results were provided; however education to understand the complexities of genomic risk information was often needed.
Indexed as
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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.