ArticleJournal of genetic counseling2012
"It's not like judgment day": public understanding of and reactions to personalized genomic risk information.
Article in Journal of genetic counseling, 2012. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 38 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
38 citing papers in PubMed, 3 syntheses or guidelines pooled it, 65 citations in OpenAlex.
- Sharing behavior and health care utilization following direct-to-consumer genetic testing: a systematic review.Open research Europe · 2025Pooled it
- The effect of communicating the genetic risk of cardiometabolic disorders on motivation and actual engagement in preventative lifestyle modification and clinical outcome: a systematic review and meta-analysis of randomised controlled trials.The British journal of nutrition · 2016Pooled it
- Internet-Based Direct-to-Consumer Genetic Testing: A Systematic Review.Journal of medical Internet research · 2015Pooled it
- Outcomes of a Randomized Controlled Trial of Genomic Counseling for Patients Receiving Personalized and Actionable Complex Disease Reports.Journal of genetic counseling · 2017Trial
- Informing the Design of Direct-to-Consumer Interactive Personal Genomics Reports.Journal of medical Internet research · 2015Trial
- Impact of delivery models on understanding genomic risk for type 2 diabetes.Public health genomics · 2014Trial
- Patient views on receiving a pharmacogenetic passport - a mixed methods study exploring experiences and use after an opportunistic offer.European journal of human genetics : EJHG · 2026Article
- Clinical translation of polygenic scores for prostate cancer screening.Nature reviews. Urology · 2026Review
- Motivations, perceptions and impacts of direct-to-consumer genetic testing among users in Brazil.Journal of community genetics · 2025Article
- The case for integrating genetic counselors into primary care: A paradigm shift for our profession.Journal of genetic counseling · 2025Article
- Evaluating an approach for communicating integrated risk scores for melanoma.European journal of human genetics : EJHG · 2025Article
- Negative results from DNA-based population screening for adult-onset diseases: the recipients' experience.Journal of community genetics · 2024Article
- Perspectives of diverse Spanish- and English-speaking patients on the clinical use of polygenic risk scores.Genetics in medicine : official journal of the American College of Medical Genetics · 2022Article
- Motivating Mexican American adults to share family history with healthcare providers.Preventive medicine reports · 2021Article
- A scoping review of social and behavioral science research to translate genomic discoveries into population health impact.Translational behavioral medicine · 2021Article
- Physician-guided, hybrid genetic testing exerts promising effects on health-related behavior without compromising quality of life.Scientific reports · 2021Article
- Comprehension and personal value of negative non-diagnostic genetic panel testing.Journal of genetic counseling · 2021Article
- Hmong participants' reactions to return of individual and community pharmacogenetic research results: "A positive light for our community".Journal of community genetics · 2021Article
- Cancer communication research in the era of genomics and precision medicine: a scoping review.Genetics in medicine : official journal of the American College of Medical Genetics · 2019Article
- "I would rather have it done by a doctor"-laypeople's perceptions of direct-to-consumer genetic testing (DTC GT) and its ethical implications.Medicine, health care, and philosophy · 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
6 authors at 5 institutions in 2 countries.
Funding
Abstract
The value of genomic risk assessment depends upon patients making appropriate behavioral changes in response to increased risk leading to disease prevention and early detection. To date, few studies have investigated consumers' response to personalized genomic disease risk information. To address this gap, we conducted semi-structured interviews with 60 adults participating in the Coriell Personalized Medicine Collaborative. The interviews took place after receiving results providing genomic and other risk information for up to eight common complex diseases. We found that participants were most likely to recall results which conferred an increased risk or those of particular personal interest. Participants understood the multi-factorial nature of common complex disease, and generally did not have negative emotional responses or overly deterministic perceptions of their results. Although most participants expressed a desire to use results to improve their health, a minority had actually taken action (behavior change or shared results with their doctor) at the time of the interview. These results suggest that participants have a reasonable understanding of genomic risk information and that provision of genomic risk information may motivate behavior change in some individuals; however additional work is needed to better understand the lack of change seen in the majority of participants.
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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.