ArticleJournal of community genetics2013
Primary care patients' views and decisions about, experience of and reactions to direct-to-consumer genetic testing: a longitudinal study.
Article in Journal of community genetics, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 19 papers, 2 of them syntheses that pooled it.
What it found
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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
19 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Personal utility in genomic testing: a systematic literature review.European journal of human genetics : EJHG · 2017Pooled it
- Internet-Based Direct-to-Consumer Genetic Testing: A Systematic Review.Journal of medical Internet research · 2015Pooled it
- Effects of participation in a U.S. trial of newborn genomic sequencing on parents at risk for depression.Journal of genetic counseling · 2022Trial
- Impact of delivery models on understanding genomic risk for type 2 diabetes.Public health genomics · 2014Trial
- Changes in acceptability, consideration, intention, and uptake of direct-to-consumer genetic tests in the Netherlands from 2017 to 2022.Journal of genetic counseling · 2025Article
- Information provision to caregivers of children with rare dermatological disorders: an international multimethod qualitative study.BMJ open · 2023Article
- Considerations for developing regulations for direct-to-consumer genetic testing: a scoping review using the 3-I framework.Journal of community genetics · 2022Article
- Family secrets: Experiences and outcomes of participating in direct-to-consumer genetic relative-finder services.American journal of human genetics · 2022Article
- Behavioral and psychological impact of genome sequencing: a pilot randomized trial of primary care and cardiology patients.NPJ genomic medicine · 2021Article
- May direct-to-consumer genetic testing have an impact on general practitioners' daily practice? a cross-sectional study of patients' intentions towards this approach.BMC family practice · 2021Article
- Comprehension and personal value of negative non-diagnostic genetic panel testing.Journal of genetic counseling · 2021Article
- Developmental and epileptic encephalopathy: Personal utility of a genetic diagnosis for families.Epilepsia open · 2021Article
- Public reactions to direct-to-consumer genetic health tests: A comparison across the US, UK, Japan and Australia.European journal of human genetics : EJHG · 2020Article
- Australians' views and experience of personal genomic testing: survey findings from the Genioz study.European journal of human genetics : EJHG · 2019Article
- Public Attitudes Toward Direct to Consumer Genetic Testing.AMIA ... Annual Symposium proceedings. AMIA Symposium · 2019Article
- Attitudes towards personal genomics among older Swiss adults: An exploratory study.Applied & translational genomics · 2016Article
- Points to Consider: Ethical, Legal, and Psychosocial Implications of Genetic Testing in Children and Adolescents.American journal of human genetics · 2015Review
- Perceptions of African-American health professionals and community members on the participation of children and pregnant women in genetic research.Public health genomics · 2014Article
- From Expectations to Experiences: Consumer Autonomy and Choice in Personal Genomic Testing.AJOB empirical bioethicsArticle
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
No grant is acknowledged in the PubMed record.
Abstract
Little is known about the decisions and perspectives of participants undergoing direct-to-consumer genetic testing (DTCGT). The aims of this study were to examine the views, attitudes and decision-making factors of primary care patients regarding DTCGT. Their experience of and reactions to testing also emerged during the study. In this longitudinal, qualitative study, 20 primary care patients participated in DTCGT and individual interviews: (1) prior to testing after the informed consent session, (2) after receiving results, (3) 3 months post-test, and (4) 12 months post-test. Interviews included open-ended questions and all transcripts were analyzed using grounded theory, constant comparison methods. Five key themes emerged from data analysis as participants underwent DTCGT and reflected on their decision over time: (1) limited concerns about DTCGT, (2) motivations for testing, (3) expectations of testing, (4) understanding of results, and (5) impact of testing and results. While a few participants expressed concerns before testing, participants were motivated to test by curiosity, gaining actionable knowledge, and altruism. Most were uncertain of what to expect from DTCGT and needed assistance in understanding results. While many reported testing had no significant impact on them, being relieved or pleased after testing was the most common emotional effect. Notably, a few participants made positive health changes in response to testing. Given the paucity of information about primary care patients and DTCGT, this study adds more in-depth information to the emerging research on how such participants' view, make decisions about, experience and react to DTCGT over time. Because uncertainty remains about the accuracy of DTCGT, the response of primary care patients to this testing requires further investigation.
Identifiers
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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.