ArticleEuropean journal of human genetics : EJHG2009
Personal genomics services: whose genomes?
Article in European journal of human genetics : EJHG, 2009. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 18 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
18 citing papers in PubMed.
- Sport and exercise genomics: the FIMS 2019 consensus statement update.British journal of sports medicine · 2020Article
- Third party interpretation of raw genetic data: an ethical exploration.European journal of human genetics : EJHG · 2017Review
- Awareness, attitudes and perspectives of direct-to-consumer genetic testing in Greece: a survey of potential consumers.Journal of human genetics · 2015Article
- Neither as harmful as feared by critics nor as empowering as promised by providers: risk information offered direct to consumer by personal genomics companies.Journal of community genetics · 2014Article
- PATH-SCAN: a reporting tool for identifying clinically actionable variants.Pacific Symposium on Biocomputing. Pacific Symposium on Biocomputing · 2014Article
- A tiered-layered-staged model for informed consent in personal genome testing.European journal of human genetics : EJHG · 2013Article
- Perception of direct-to-consumer genetic testing and direct-to-consumer advertising of genetic tests among members of a large managed care organization.Journal of genetic counseling · 2012Article
- Swabbing students: should universities be allowed to facilitate educational DNA testing?The American journal of bioethics : AJOB · 2012Article
- Direct-to-consumer personalized genomic testing.Human molecular genetics · 2011Review
- Personal genome testing: test characteristics to clarify the discourse on ethical, legal and societal issues.BMC medical ethics · 2011Review
- Personal genetics: regulatory framework in Europe from a service provider's perspective.European journal of human genetics : EJHG · 2011Review
- Genetic testing and common disorders in a public health framework: how to assess relevance and possibilities. Background Document to the ESHG recommendations on genetic testing and common disorders.European journal of human genetics : EJHG · 2011Review
- Genomics for disease treatment and prevention.The Psychiatric clinics of North America · 2011Review
- Participation in genetic testing research varies by social group.Public health genomics · 2011Article
- Three periods of one and a half decade of ischemic stroke susceptibility gene research: lessons we have learned.Genome medicine · 2010Article
- Evaluation of genetic tests for susceptibility to common complex diseases: why, when and how?Human genetics · 2010Article
- Direct to consumer genetic tests.European journal of human genetics : EJHG · 2009Article
- Challenges of incorporating pharmacogenomics into clinical practice.Gastrointestinal cancer research : GCR · 2009Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
New companies offering personal whole-genome information services over the internet are dynamic and highly visible players in the personal genomics field. For fees currently ranging from US$399 to US$2500 and a vial of saliva, individuals can now purchase online access to their individual genetic information regarding susceptibility to a range of chronic diseases and phenotypic traits based on a genome-wide SNP scan. Most of the companies offering such services are based in the United States, but their clients may come from nearly anywhere in the world. Although the scientific validity, clinical utility and potential future implications of such services are being hotly debated, several ethical and regulatory questions related to direct-to-consumer (DTC) marketing strategies of genetic tests have not yet received sufficient attention. For example, how can we minimize the risk of unauthorized third parties from submitting other people's DNA for testing? Another pressing question concerns the ownership of (genotypic and phenotypic) information, as well as the unclear legal status of customers regarding their own personal information. Current legislation in the US and Europe falls short of providing clear answers to these questions. Until the regulation of personal genomics services catches up with the technology, we call upon commercial providers to self-regulate and coordinate their activities to minimize potential risks to individual privacy. We also point out some specific steps, along the trustee model, that providers of DTC personal genomics services as well as regulators and policy makers could consider for addressing some of the concerns raised below.
Indexed as
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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.