ArticleJournal of personalized medicine2019
Direct-to-Consumer Genetic Testing Data Privacy: Key Concerns and Recommendations Based on Consumer Perspectives.
Article in Journal of personalized medicine, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 23 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
23 citing papers in PubMed, 1 synthesis or guideline pooled it.
- A systematic review of consumers' knowledge, attitudes and experiences of primary health professionals' role in genomic medicine.European journal of human genetics : EJHG · 2025Pooled it
- Brain-Hype and For-Profit Medical Devices.Journal of bioethical inquiry · 2026Article
- Article
- Direct-to-Consumer Genetic Testing.NEJM evidence · 2025Review
- Consent and its discontents: the case of UK Biobank.Medicine, health care, and philosophy · 2025Article
- Comparing owner reported and genetic breed identification reveals high concordance in a large cohort from the Dog Aging Project.Scientific reports · 2025Article
- Navigating sexual orientation and gender identity data privacy concerns in United States genetics practices.Journal of genetic counseling · 2025Article
- Perceptions of Multicancer Detection Tests Among Primary Care Physicians and Laypersons: A Qualitative Study.Cancer medicine · 2024Article
- Review
- Patient perspectives on pharmacogenomic (PGx) testing for antidepressant prescribing in primary care: a qualitative description study.Journal of community genetics · 2024Article
- Workplace genetic testing: which employees are likely to participate, what are their concerns with employer sponsorship, and which design features could reduce barriers and increase participation?Frontiers in genetics · 2024Article
- US Residents' Preferences for Sharing of Electronic Health Record and Genetic Information: A Discrete Choice Experiment.Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research · 2023Article
- Parents' Perspectives on Secondary Genetic Ancestry Findings in Pediatric Genomic Medicine.Clinical therapeutics · 2023Article
- A Social and Ethical Framework for Providing Health Information Obtained from Combining Genetics and Fitness Tracking Data.Technology in society · 2023Article
- An Assessment of Perspectives and Concerns Among Research Participants of Childbearing Age Regarding the Health-Relatedness of Data, Online Data Privacy, and Donating Data to Researchers: Survey Study.Journal of medical Internet research · 2023Article
- A Survey of Research Participants' Privacy-Related Experiences and Willingness to Share Real-World Data with Researchers.Journal of personalized medicine · 2022Article
- Knowledge and Attitudes about Privacy and Secondary Data Use among African-Americans Using Direct-to-Consumer Genetic Testing.Public health genomics · 2022Article
- Strategies to Improve the Clinical Outcomes for Direct-to-Consumer Pharmacogenomic Tests.Genes · 2021Review
- Direct-to-consumer genetic testing: Prospective users' attitudes toward information about ancestry and biological relationships.PloS one · 2021Article
- XY Gonadal Dysgenesis in a Phenotypic Female Identified by Direct-to-Consumer Genetic Testing.Pediatrics · 2020Article
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
Direct-to-consumer genetic testing (DTC-GT) companies are engaging health consumers in unprecedented ways and leveraging the genetic information they collect to further engage health companies. This has produced controversy about DTC-GT consumer expectations, standards, and perceptions of privacy. In this commentary, we highlight recent events involving DTC-GT companies and controversy about privacy that followed those events and discuss recent studies that have explored DTC-GT consumer concerns about privacy. We discuss DTC-GT company standards of upholding consumer privacy and the general accessibility of DTC-GT company terms of use agreements and privacy policies that are written at reading levels above that of many consumers. We conclude that broader discussions and more research are needed to identify DTC-GT consumer concerns about and expectations of privacy. We anticipate that our recommendations will advance discussions on consumer privacy expectations and protections in an era of increasing engagement in DTC-GT.
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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.