ArticleApplied & translational genomics2016
Beyond clinical utility: The multiple values of DTC genetics.
Article in Applied & translational genomics, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 18 papers, 1 of them a synthesis 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
18 citing papers in PubMed, 1 synthesis or guideline pooled it.
- The Psychosocial Impact of Receiving Whole Genome and Whole Exome Sequencing Results in Adults: A Systematic Review.Journal of genetic counseling · 2026Pooled it
- FROM DISCOVERY SCIENCE TO THE CLINIC - HERITABLE ENDOCRINE CANCERS AND RELATED DISORDERS: Functional imaging in hereditary endocrine neoplasms: evolving modalities and clinical implications.Endocrine-related cancer · 2026Review
- How Has the Rise of Direct-To-Consumer Genetic Testing Impacted Genetic Counselling Practice? A Scoping Review.Clinical genetics · 2026Article
- Valuing genetic and genomic testing in France: current challenges and latest evidence.Journal of community genetics · 2022Article
- Framing utility: Regulatory reform and genetic tests in the USA, 1989-2000.Social science & medicine (1982) · 2022Article
- Knowledge and Attitudes about Privacy and Secondary Data Use among African-Americans Using Direct-to-Consumer Genetic Testing.Public health genomics · 2022Article
- The Role of Genetic Testing for Parkinson's Disease.Current neurology and neuroscience reports · 2021Review
- Secondary Data Usage in Direct-to-Consumer Genetic Testing: To What Extent Are Customers Aware and Concerned?Public health genomics · 2021Article
- Quality of life drives patients' preferences for secondary findings from genomic sequencing.European journal of human genetics : EJHG · 2020Article
- Data Work: Meaning-Making in the Era of Data-Rich Medicine.Journal of medical Internet research · 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
- Sequencing Newborns: A Call for Nuanced Use of Genomic Technologies.The Hastings Center report · 2018Article
- Medicine, market and communication: ethical considerations in regard to persuasive communication in direct-to-consumer genetic testing services.BMC medical ethics · 2018Article
- Effectiveness of personal genomic testing for disease-prevention behavior when combined with careful consultation with a physician: a preliminary study.BMC research notes · 2018Article
- Transparency of genetic testing services for 'health, wellness and lifestyle': analysis of online prepurchase information for UK consumers.European journal of human genetics : EJHG · 2017Article
- Psychological and behavioural impact of returning personal results from whole-genome sequencing: the HealthSeq project.European journal of human genetics : EJHG · 2017Article
- Personal genomics: Where are we now?Applied & translational genomics · 2016Article
- 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
2 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
One point of consensus in the otherwise very controversial discussion about the benefits and dangers of DTC genetics in the health domain is the lack of substantial clinical utility. At the same time, both the empirical and conceptual literature indicate that health-related DTC tests can have value and utility outside of the clinic. We argue that a broader and multi-faceted conceptualization of utility and value would enrich the ethical and social discussion of DTC testing in several ways: First, looking at ways in which DTC testing can have personal and social value for users - in the form of entertainment, learning, or a way to relate to others - can help to explain why people still take DTC tests, and will, further down the line, foster a more nuanced understanding of secondary and tertiary uses of DTC test results (which could very well unearth new ethical and regulatory challenges). Second, considering the economic value and broader utility of DTC testing foregrounds wider social and political aspects than have been dominant in the ethical and regulatory debates surrounding DTC genetics so far. These wider political aspects include the profound power asymmetries that characterize the collection and use of personal genetic data in many contexts.
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.