ReviewGenetics in medicine : official journal of the American College of Medical Genetics2020
Who's on third? Regulation of third-party genetic interpretation services.
Review in Genetics in medicine : official journal of the American College of Medical Genetics, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 22 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
22 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Sharing behavior and health care utilization following direct-to-consumer genetic testing: a systematic review.Open research Europe · 2025Pooled it
- Ethical Priorities Among Commercial Genomics Professionals : Survey Evidence Highlighting Diversity, Fragmented Privacy Law, and Human Rights Risks as Central Participant Concerns.Journal of bioethical inquiry · 2026Article
- Competition in human genetic technologies: The current US legal landscape.American journal of human genetics · 2026Review
- Lost in .*VCF Translation. From Data Fragmentation to Precision Genomics: Technical, Ethical, and Interpretive Challenges in the Post-Sequencing Era.Journal of personalized medicine · 2025Review
- Direct-to-Consumer Genetic Testing: A Comprehensive Review.Therapeutic innovation & regulatory science · 2023Review
- An Environmental Scan of Consumer-Initiated Germline Genetic Testing for Health Risks.Mayo Clinic proceedings · 2023Review
- A game theoretic approach to balance privacy risks and familial benefits.Scientific reports · 2023Article
- Polygenic Scores in the Direct-to-Consumer Setting: Challenges and Opportunities for a New Era in Consumer Genetic Testing.Journal of personalized medicine · 2023Review
- Attitudes towards and sociodemographic determinants of genetic test usage in the USA; data from the Health Information National Trend Survey, 2020.Journal of genetic counseling · 2023Article
- Regulation of Laboratory-Developed Tests in Preventive Oncology: Emerging Needs and Opportunities.Journal of clinical oncology : official journal of the American Society of Clinical Oncology · 2023Review
- Smartphone accelerometer data as a proxy for clinical data in modeling of bipolar disorder symptom trajectory.NPJ digital medicine · 2022Article
- Genomic health data generation in the UK: a 360 view.European journal of human genetics : EJHG · 2022Article
- Core values of genomic citizen science: results from a qualitative interview study.BioSocieties · 2022Article
- Three decades of genetic privacy: a metaphoric journey.Human molecular genetics · 2021Review
- Commercial DNA tests and police investigations: a broad bioethical perspective.Journal of medical ethics · 2021Article
- Direct-to-consumer genetic testing: Prospective users' attitudes toward information about ancestry and biological relationships.PloS one · 2021Article
- Parental Access to Children's Raw Genomic Data in Canada: Legal Rights and Professional Responsibility.Frontiers in genetics · 2021Article
- Direct-to-consumer genomic testing: Are nurses prepared?Nursing · 2020Article
- The Federal Trade Commission and Consumer Protections for Mobile Health Apps.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2020Article
- Genomic Sequencing Capacity, Data Retention, and Personal Access to Raw Data in Europe.Frontiers in genetics · 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
5 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
In recent years, third-party genetic interpretation services have emerged to help individuals understand their raw genetic data obtained from researchers, clinicians, and direct-to-consumer genetic testing companies. The objectives of these services vary but include matching users to genetic relatives, selling customized diet and fitness plans, and providing health risk assessments. As these services proliferate, concerns are being raised about their accuracy, safety, and privacy practices. Thus far, US regulatory agencies have not taken an official position with respect to third-party genetic interpretation services, which has caused uncertainty regarding whether and how they might be regulated. To clarify this area, we analyzed their potential oversight by four US agencies that generally have been active in the regulation of genetic testing services and information: the Centers for Medicare and Medicaid Services, the Food and Drug Administration, the Department of Health and Human Services' Office of Civil Rights, and the Federal Trade Commission. We conclude that the scope of federal jurisdiction over third-party genetic interpretation services-while limited-could be appropriate at this time, subject to agency clarification and appropriate exercise of oversight.
Indexed as
Identifiers
31402353What 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.