ArticleEuropean journal of human genetics : EJHG2017
Transparency of genetic testing services for 'health, wellness and lifestyle': analysis of online prepurchase information for UK consumers.
Article in European journal of human genetics : EJHG, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 16 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
16 citing papers in PubMed, 42 citations in OpenAlex.
- Navigating direct-to-consumer genetic testing: experiences, decisions and perspectives of Dutch users.European journal of human genetics : EJHG · 2026Article
- Internet-Based Abnormal Chromosomal Diagnosis During Pregnancy Using a Noninvasive Innovative Approach to Detecting Chromosomal Abnormalities in the Fetus: Scoping Review.JMIR bioinformatics and biotechnology · 2024Article
- Review
- Policy Guidance for Direct-to-Consumer Genetic Testing Services: Framework Development Study.Journal of medical Internet research · 2024Review
- Online Provision ofCancers · 2024Article
- Article
- Investigating Employees' Concerns and Wishes Regarding Digital Stress Management Interventions With Value Sensitive Design: Mixed Methods Study.Journal of medical Internet research · 2023Article
- Genomic health data generation in the UK: a 360 view.European journal of human genetics : EJHG · 2022Article
- Direct-to-Consumer Genetic Testing in Korea: Current Status and Significance in Clinical Nutrition.Clinical nutrition research · 2021Review
- Clinical Implications of Combinatorial Pharmacogenomic Tests Based on Cytochrome P450 Variant Selection.Frontiers in genetics · 2021Article
- The Ethics of Digital Well-Being: A Thematic Review.Science and engineering ethics · 2020Review
- European citizens' perspectives on direct-to-consumer genetic testing: an updated systematic review.European journal of public health · 2020Article
- Genome sequencing in healthcare: understanding the UK general public's views and implications for clinical practice.European journal of human genetics : EJHG · 2020Article
- Genetic Privacy and Data Protection: A Review of Chinese Direct-to-Consumer Genetic Test Services.Frontiers in genetics · 2020Article
- Recent developments in genetic/genomic medicine.Clinical science (London, England : 1979) · 2019Review
- Genetics in the 21st Century: Implications for patients, consumers and citizens.F1000Research · 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 at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
The declining cost of DNA sequencing has been accompanied by a proliferation of companies selling 'direct-to-consumer genetic testing' (DTC-GT) services. Many of these are marketed online as tools for enabling citizens to make more informed decisions about their health, wellness and lifestyle. We assessed the 'information for consumers' provided by these companies at the prepurchase stage, which could influence initial decisions to part with money, data or tissue samples. A scoping exercise revealed 65 DTC-GT companies advertising their services online to consumers in the United Kingdom, of which 15 met our inclusion criteria. We benchmarked their consumer information against the good practice principles developed by the UK Human Genetics Commission (HGC). No provider complied with all the HGC principles and overall levels of compliance varied considerably. Although consent for testing was discussed by all but one company, information about data reuse for research or other purposes was often sparse and consent options limited or unclear. Most did not provide supplementary support services to help users better understand or cope with the implications of test results. We provide recommendations for updating the preconsumer transparency aspects of the HGC guidelines to ensure their fitness-for-purpose in this rapidly changing market. We also recommend improving coordination between relevant governance bodies to ensure minimum standards of transparency, quality and accountability. Although DTC-GT has many potential benefits, close partnership between consumers, industry and government, along with interdisciplinary science input, are essential to ensure that these innovations are used ethically and responsibly.
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.