ReviewHuman genomics2018
APPLaUD: access for patients and participants to individual level uninterpreted genomic data.
Review in Human genomics, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 32 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
32 citing papers in PubMed.
- Model Context Protocol: The unexpected catalyst of a bioinformatics interoperability revolution.PLoS computational biology · 2026Article
- Returning raw genomic data to research participants in a pediatric cancer precision medicine trial.NPJ genomic medicine · 2025Article
- From code to care: Clinician and researcher perspectives on an optimal therapeutic web portal for acute myeloid leukemia.PloS one · 2024Article
- Return of Results in Genomic Research Using Large-Scale or Whole Genome Sequencing: Toward a New Normal.Annual review of genomics and human genetics · 2023Review
- Article
- The application of data altruism in clinical research through empirical and legal analysis lenses.Frontiers in medicine · 2023Article
- Returning raw genomic data: rights of research participants and obligations of health care professionals.The Medical journal of Australia · 2022Article
- Core values of genomic citizen science: results from a qualitative interview study.BioSocieties · 2022Article
- An Ethics Framework for Evaluating Ownership Practices in Biomedical Citizen Science.Citizen science : theory and practice · 2022Article
- Please give me a copy of my child's raw genomic data.NPJ genomic medicine · 2021Article
- Parental Access to Children's Raw Genomic Data in Canada: Legal Rights and Professional Responsibility.Frontiers in genetics · 2021Article
- Research data management in health and biomedical citizen science: practices and prospects.JAMIA open · 2020Article
- Return of Results in Participant-Driven Research: Learning from Transformative Research Models.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2020Article
- 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
- Article
- Do patients and research subjects have a right to receive their genomic raw data? An ethical and legal analysis.BMC medical ethics · 2020Article
- Who's on third? Regulation of third-party genetic interpretation services.Genetics in medicine : official journal of the American College of Medical Genetics · 2020Review
- German and Italian Users of Web-Accessed Genetic Data: Attitudes on Personal Utility and Personal Sharing Preferences. Results of a Comparative Survey (n=192).Frontiers in genetics · 2020Article
- Genomic Sequencing Capacity, Data Retention, and Personal Access to Raw Data in Europe.Frontiers in genetics · 2020Article
- A FAUSTIAN BARGAIN THAT UNDERMINES RESEARCH PARTICIPANTS' PRIVACY RIGHTS AND RETURN OF RESULTS.Florida law review · 2019Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
12 authors.
Funding
Abstract
backgroundThere is a growing support for the stance that patients and research participants should have better and easier access to their raw (uninterpreted) genomic sequence data in both clinical and research contexts. MAIN BODY: We review legal frameworks and literature on the benefits, risks, and practical barriers of providing individuals access to their data. We also survey genomic sequencing initiatives that provide or plan to provide individual access. Many patients and research participants expect to be able to access their health and genomic data. Individuals have a legal right to access their genomic data in some countries and contexts. Moreover, increasing numbers of participatory research projects, direct-to-consumer genetic testing companies, and now major national sequencing initiatives grant individuals access to their genomic sequence data upon request.
conclusionDrawing on current practice and regulatory analysis, we outline legal, ethical, and practical guidance for genomic sequencing initiatives seeking to offer interested patients and participants access to their raw genomic data.
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.