About the project
Who Owns Your DNA? brings together laws and policies that shape how genetic information is collected, shared, protected, and used.
Why this project exists
Genetic information has implications for research, health care, consumer testing, insurance, employment, and law enforcement. The rules differ across jurisdictions and legal frameworks. This project makes the records and their primary sources easier to find, compare, and understand.
Intended audiences
This resource is designed for researchers, journalists, advocates, policymakers, educators, and anyone seeking reliable policy information.
Policy context and factual records
Genetics and genomics policy can affect scientific progress, personal and public health, and how genetic information is used in society. Record summaries remain grounded in the cited source. Plain-language context and advocacy material are identified separately.
Methodology
Scope, inclusion criteria, source hierarchy, review, uncertainty, corrections, and versioning.
Data
Structured records, machine-readable downloads, schema validation, and release planning.
Citation
Guidance for citing individual records, the website, and future dataset releases.
NHGRI source archive
Source records retrieved from NHGRI, with the retrieval date, original wording, and provenance manifest preserved.
ASHG policy positions
Explore professional-society perspectives on genetic privacy, data sharing, discrimination, genetic testing, research, and related policy questions.
Contribute a source
- Locate the primary government source.
- Record the jurisdiction, identifier, legal status, and relevant dates.
- Propose factual wording and topic tags.
- Submit the source for human review.
Repository contribution instructions and a public contact method will be added before launch.
Contributors and acknowledgments
Contributor names and acknowledgments will be added with permission. This independent project is not affiliated with or endorsed by NIH, NLM, NCBI, ASHG, or another organization.