ReviewGenetics in medicine : official journal of the American College of Medical Genetics2017
Sharing data under the 21st Century Cures Act.
Review in Genetics in medicine : official journal of the American College of Medical Genetics, 2017. 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.
- Return of participant-level clinical trial results to participants: pilot of a simplified centralised approach.BMJ open · 2024Trial
- Approaches to Collect Comprehensive Electronic Patient Data Across Multiple Providers and Payers for Research: Landscape Analysis.Journal of medical Internet research · 2026Article
- Article
- Analyzing Physician In Basket Burden and Efficiency Using K-Means Clustering.Applied clinical informatics · 2025Article
- Cardiovascular care with digital twin technology in the era of generative artificial intelligence.European heart journal · 2024Review
- Translating Commercial Health Data Privacy Ethics into Change.The American journal of bioethics : AJOB · 2023Article
- How Are Leading Research Institutions Engaging with Data Sharing Tools and Programs?AMIA ... Annual Symposium proceedings. AMIA Symposium · 2023Article
- Clinical Decision Support Stewardship: Best Practices and Techniques to Monitor and Improve Interruptive Alerts.Applied clinical informatics · 2022Review
- Perceptions and Opinions Towards Data-Sharing: A Survey of Addiction Journal Editorial Board Members.The journal of scientific practice and integrity · 2022Article
- Enabling realistic health data re-identification risk assessment through adversarial modeling.Journal of the American Medical Informatics Association : JAMIA · 2021Article
- Privacy Officers: Who They are and Where They Work.Perspectives in health information managemen · 2021Article
- Article
- Integrating Rules for Genomic Research, Clinical Care, Public Health Screening and DTC Testing: Creating Translational Law for Translational Genomics.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2020Article
- Access and Disclosure of Personal Health Information: A Challenging Privacy Landscape in 2016-2018.Yearbook of medical informatics · 2018Review
- Autonomous Multimodal Metabolomics Data Integration for Comprehensive Pathway Analysis and Systems Biology.Analytical chemistry · 2018Article
- Clinical Trial Participants' Views of the Risks and Benefits of Data Sharing.The New England journal of medicine · 2018Article
- Ethics in biological anthropology.American journal of physical anthropology · 2018Review
- Analysis of state laws on informed consent for clinical genetic testing in the era of genomic sequencing.American journal of medical genetics. Part C, Seminars in medical genetics · 2018Article
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
Abstract
On 13 December 2016, President Obama signed the 21st Century Cures Act ("the Act") into law. Many of its provisions support the creation of an "Information Commons," an ecosystem of separate but interconnected initiatives that facilitate open and responsible sharing of genomic and other data for research and clinical purposes. For example, the Act supports the National Institutes of Health in mandating data sharing, provides funding and guidance for the large national cohort program now known as All of Us, expresses congressional support for a global pediatric study network, and strengthens patient access to health information. The Act also addresses potential barriers to data sharing. For example, it makes the issuance of certificates of confidentiality automatic for federally funded research involving "identifiable, sensitive" information and strengthens the associated protections. At the same time, the Act exacerbates or neglects several challenges, for example, increasing complexity by adding a new definition of "identifiable" and failing to address the financial sustainability of data sharing and the scope of commercialization. In sum, the Act is a positive step, yet there is still much work to be done before the goals of broad data sharing and utilization can be achieved.
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.