Methodology

How to read a record

Start with the status and review date. Then read what the law or policy requires or prohibits, followed by its important limits and exceptions. Use the linked primary source to confirm the current official text.

Scope and inclusion

The database includes selected U.S. federal, state, district, and territorial laws and policies concerning genetic information, genomic data, biological samples, genetic testing, and related uses. Coverage is not comprehensive and expands as sources are checked.

Inclusion criteria

A record must identify the relevant government, primary source, type of record, status, and connection to a defined genetics or genomics topic. A law or policy is not added until a person checks the primary source.^{1, 2}

Exclusions

The database excludes unsupported claims, duplicate records, secondary summaries presented as legal authority, and changes that have not been checked. General privacy or health laws may be excluded until a source documents how they apply to genetic information.

Sources and review

Source order

1. Enacted statutory text
2. Legislature or government bill page
3. Official regulation
4. Official agency guidance
5. Court opinion
6. Official government archive
7. Credible legal or policy secondary source
8. News reporting when necessary for context

This source order is a rule for the database. Legal-mapping literature informed the broader practices of defining scope, retrieving legal text, and documenting how records are coded and checked.^1–3

Review process

1. Locate an official government source.
2. Determine the jurisdiction, record type, status, dates, and scope.
3. Draft a summary of the status, requirements, and limits.⁴
4. Assign topic labels and document uncertainty.
5. Check the data structure and topic labels.
6. Complete human source and summary review before publication.^{1, 2, 4}

NHGRI database archive

The combined directory includes the complete NHGRI Genome Statute and Legislation Database. Records retain their original state, link, topic, status, summary, and retrieval timestamp. This database uses NHGRI's topic vocabulary, with stable topic slugs for search and permanent links. NHGRI last updated its source page on February 8, 2024; current decisions should use the linked primary source.

Status labels

Records use the NHGRI labels Approved, Died, Enacted, Passed House, Passed Senate, Statute, Pending, and Introduced. Record type remains separate.

Method evidence

A targeted PubMed Central search through Paperclip on September 2, 2026, informed the method. It covered legal epidemiology, policy surveillance, legal mapping, coding, quality control, search reporting, and summaries.⁵ This was background research, not a systematic or scoping review, and this database does not claim adherence to PRISMA-S.

Maintenance and limits

Uncertainty

“No specific law identified” describes a database result, not a definitive conclusion that no law exists. Legal coverage can depend on definitions, exceptions, effective dates, preemption, enforcement, and the facts of a particular situation.

Corrections and versions

Corrections create a record-history entry and increment the record version when the substantive public record changes. GitHub releases provide stable snapshot identifiers and checksum-verified data files.

Automated updates

A weekly monitor compares the checked-in NHGRI snapshot with a newly retrieved candidate and presents changes in a draft pull request. Human review is required before legal summaries or candidate data are published. Retrieval timestamps and cosmetic changes alone do not create a snapshot.

References

1. Burris S. The Advantages of Scientific Legal Mapping. Journal of Law, Medicine & Ethics. 2025;53(1):134-136. doi:10.1017/jme.2025.47
2. Skuster P, Menzel J, Ghorashi AR, Perkins M. Policy surveillance for a global analysis of national abortion laws. Sexual and Reproductive Health Matters. 2022;30(1):2064208. doi:10.1080/26410397.2022.2064208
3. Poirier MJP, Viens AM, Penney TL, et al. Principles and methods of global legal epidemiology. Journal of Epidemiology and Community Health. 2022;76:840-845. doi:10.1136/jech-2021-217202
4. Maurer M, Siegel JE, Firminger KB, Lowers J, Dutta T, Chang JS. Lessons Learned from Developing Plain Language Summaries of Research Studies. HLRP: Health Literacy Research and Practice. 2021;5(2):e155-e161. doi:10.3928/24748307-20210524-01
5. Rethlefsen ML, Kirtley S, Waffenschmidt S, et al. PRISMA-S: an extension to the PRISMA Statement for Reporting Literature Searches in Systematic Reviews. Systematic Reviews. 2021;10:39. doi:10.1186/s13643-020-01542-z