ArticleGenetics in medicine : official journal of the American College of Medical Genetics2010
Informational content, literacy demands, and usability of websites offering health-related genetic tests directly to consumers.
Article in Genetics in medicine : official journal of the American College of Medical Genetics, 2010. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 50 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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
50 citing papers in PubMed, 2 syntheses or guidelines pooled 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
- Information-seeking and sharing behavior following genomic testing for diabetes risk.Journal of genetic counseling · 2015Trial
- Health Literacy and Usability of Public Health Websites for COVID-19 Vaccine Search.Health literacy research and practice · 2026Article
- Adaptation of e-health impact questionnaire into Turkish: a validity and reliability study.Frontiers in digital health · 2025Article
- Policy Guidance for Direct-to-Consumer Genetic Testing Services: Framework Development Study.Journal of medical Internet research · 2024Review
- Article
- Evaluating a Public Health Information Service According to Users' Socioeconomic Position and Health Status: Protocol for a Cross-Sectional Study.JMIR research protocols · 2023Article
- Assessing the general public's view of direct-to-consumer (DTC) genetic testing and their interpretation of DTC website disclaimer messages.European journal of human genetics : EJHG · 2023Article
- Automated Workflow for Usability Audits in the PHR Realm.International journal of environmental research and public health · 2022Article
- A survey of aortic disease biorepository participants' preferences for return of research genetic results.Journal of genetic counseling · 2021Article
- Investigating the Impact of Usability on Energy Efficiency of Web-based Personal Health Records.Journal of medical systems · 2021Article
- Cascading After Peridiagnostic Cancer Genetic Testing: An Alternative to Population-Based Screening.Journal of clinical oncology : official journal of the American Society of Clinical Oncology · 2020Article
- Genetic Privacy and Data Protection: A Review of Chinese Direct-to-Consumer Genetic Test Services.Frontiers in genetics · 2020Article
- A systematic analysis of online marketing materials used by providers of expanded carrier screening.Genetics in medicine : official journal of the American College of Medical Genetics · 2018Article
- Factors Associated with Acceptability, Consideration and Intention of Uptake of Direct-To-Consumer Genetic Testing: A Survey Study.Public health genomics · 2018Article
- Third party interpretation of raw genetic data: an ethical exploration.European journal of human genetics : EJHG · 2017Review
- Pre- and post-testing counseling considerations for the provision of expanded carrier screening: exploration of European geneticists' views.BMC medical ethics · 2017Article
- Self-reported race and ethnicity of US biobank participants compared to the US Census.Journal of community genetics · 2017Article
- Patient knowledge and information-seeking about personalized cancer therapy.International journal of medical informatics · 2016Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors.
Funding
Abstract
purposeAs direct-to-consumer genetic testing becomes more available, a diverse group of consumers, including those with limited health literacy, may consider testing. In light of concerns raised about direct-to-consumer genetic testing, this study sought to critically examine whether the informational content, literacy demands, and usability of health-related direct-to-consumer websites met existing recommendations.
methodsA content analysis was performed on 29 health-related direct-to-consumer websites. Two coders independently evaluated each website for informational content (e.g., benefits, limitations), literacy demands (e.g., reading level), and usability (e.g., ease of navigation).
resultsMost sites presented health conditions and some markers for which they tested, benefits of testing, a description of the testing process, and their privacy policy. Fewer cited scientific literature, explained test limitations, or provided an opportunity to consult a health professional. Key informational content was difficult to locate on most sites. Few sites gave sample disease risk estimates or used common language and explained technical terms consistently. Average reading level was grade 15.
conclusionThe quality of informational content, literacy demands, and usability across health-related direct-to-consumer websites varied widely. Many users would struggle to find and understand the important information. For consumers to better understand the content on these sites and evaluate the meaning of the tests for their health, sites should lower the demands placed on users by distilling and prioritizing the key informational content while simultaneously attending to the reading level and usability elements. In the absence of regulation compelling such changes, government agencies or professional organizations may need to increase consumer and provider awareness of these issues.
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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.