SynthesisEuropean journal of human genetics : EJHG2012
Direct-to-consumer genomic testing: systematic review of the literature on user perspectives.
Synthesis in European journal of human genetics : EJHG, 2012. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 42 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
42 citing papers in PubMed, 3 syntheses or guidelines pooled it.
- A systematic literature review of individuals' perspectives on privacy and genetic information in the United States.PloS one · 2018Pooled it
- Pooled it
- Internet-Based Direct-to-Consumer Genetic Testing: A Systematic Review.Journal of medical Internet research · 2015Pooled it
- Informing the Design of Direct-to-Consumer Interactive Personal Genomics Reports.Journal of medical Internet research · 2015Trial
- Pharmacogenetic smoking cessation intervention in a health care setting: a pilot feasibility study.Nicotine & tobacco research : official journal of the Society for Research on Nicotine and Tobacco · 2013Trial
- Review
- Considerations for developing regulations for direct-to-consumer genetic testing: a scoping review using the 3-I framework.Journal of community genetics · 2022Article
- A scoping review of social and behavioral science research to translate genomic discoveries into population health impact.Translational behavioral medicine · 2021Article
- Direct-to-consumer genetic testing: Prospective users' attitudes toward information about ancestry and biological relationships.PloS one · 2021Article
- Australians' views and experience of personal genomic testing: survey findings from the Genioz study.European journal of human genetics : EJHG · 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
- Public Attitudes Toward Direct to Consumer Genetic Testing.AMIA ... Annual Symposium proceedings. AMIA Symposium · 2019Article
- Opportunities and challenges of integrating genetics education about human diversity into public health nurses' responsibilities in Japan.BMC nursing · 2019Article
- Physician preparedness for big genomic data: a review of genomic medicine education initiatives in the United States.Human molecular genetics · 2018Review
- Australians' views on personal genomic testing: focus group findings from the Genioz study.European journal of human genetics : EJHG · 2018Article
- Article
- Article
- Communication of cancer-related genetic and genomic information: A landscape analysis of reviews.Translational behavioral medicine · 2018Review
- An E-Learning Module to Improve Nongenetic Health Professionals' Assessment of Colorectal Cancer Genetic Risk: Feasibility Study.JMIR medical education · 2017Article
- Motivations of participants in the citizen science of microbiomics: data from the British Gut Project.Genetics in medicine : official journal of the American College of Medical Genetics · 2017Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Genetic tests have traditionally been offered by health professionals. However, genomic tests have been available direct to the consumer for the last decade, increasingly via the Internet. The aim of this systematic review was to ascertain the evidence concerning use of direct-to-consumer genomic testing from the consumer perspective. Primary research was identified using the search terms 'direct-to-consumer' and 'genomic or genetic' in six bibliographic databases and citation searching of findings. In all, 17 papers were reviewed: 3 qualitative and 14 quantitative. Findings indicate a low level of awareness of direct-to-consumer genomic testing and, because of the hypothetical nature of many studies, little evidence from users of such tests. Although potential users appear to be interested in information about their risks of developing common diseases, concerns were expressed about privacy of genetic risk information and the reliability of genomic tests. Consumers were anxious about the nature of the results. There appeared to be a preference to access genomic tests via a health professional, or to discuss the results and obtain advice from a health professional. Authors of only two papers recruited participants who had used direct-to-consumer tests and samples from the large quantitative studies were not representative of the population. These factors limit the value of the available evidence. However, we conclude that there is public interest in direct-to-consumer genomic tests, and that this is likely to result in an increased workload for a range of health professionals. We also consider that there are educational implications for both consumers and health professionals.
Indexed as
Identifiers
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.