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Genome Statute and Legislation Database

The Genome Statute and Legislation Database is comprised of state statutes and bills introduced during the 2002-2024 U.S. state legislative sessions.

Overview

The Genome Statute and Legislation Database is reviewed and updated monthly. Searchable topics in the database include employment and insurance discrimination, health insurance coverage, privacy, research, the use of residual newborn screening specimens and other topics of interest.

Definitions of terms such as "bill", "statute", and "regulation" are available through the Glossary of Statutory, Legislative, and Regulatory Terms.

For other helpful links and legislative databases, please see Additional Resources.

Search

State Primary Link Topic(s) Bill Status Sort ascending Summary
Massachusetts Other Topics Died

Requires that certain state entities make a dedicated effort to encourage diversity and advance equity based on race, color, religious creed, national origin, sex, gender identity, sexual orientation, genetic information, ancestry, disability, and language in any recommendations, policies, programs and initiatives developed. 1/5/2021 In Senate. No further action taken. Died.

Missouri Employment Nondiscrimination Died

This bill authorizes designated administrators to take action if it is determined that a person has engaged, is engaging in, or has taken a substantial step toward engaging in an act of discrimination prohibited under the state genetic nondiscrimination laws that applies to employers. Measure failed.

New Jersey Other Topics Died

Establishes New Jersey Pharmacogenomics Commission. Died.

New York Research Died

Regulates the use of human subjects for medical research and experimentation, including subjects with mental disorders and children. Died.

Oregon Health Insurance Coverage Died

A health benefit plan offered in Oregon must provide coverage for BRCA testing, if indicated. Died.

Virginia Privacy Died

Gives consumers the right to access their data and determine if it has been sold to a data broker. Requires a controller, defined in the bill as a person that, alone or jointly with others, determines the purposes and means of the processing of personal data, to facilitate requests to exercise consumer rights regarding access, correction, deletion, restriction of processing, data portability, objection, and profiling. The measure also (i) requires transparent processing of personal data through a privacy notice, (ii) requires controllers to disclose if they process personal data for direct marketing or sell it to data brokers, and (iii) requires controllers to conduct a risk assessment of each of their processing activities involving personal data and an additional risk assessment any time there is a change in processing that materially increases the risk to consumers. The measure applies to any legal entity that conducts business in the Commonwealth or produces products or services that are intentionally targeted to residents of the Commonwealth and that (a) controls or processes personal data of not fewer than 100,000 consumers or (b) derives over 50 percent of gross revenue from the sale of personal data and processes or controls personal data of not fewer than 25,000 customers. Sensitive data includes genetic or biometric data. Died.

Montana Neonatal sequencing Approved

Revise laws related to collection of genetic material for newborn screenings.

New Hampshire Genetic data storage/privacy/sharing (medicine) Approved

Relative to conditions for genetic testing.

Texas Genetic data storage/privacy/sharing (industry) Approved

Relating to an individual's genetic data, including the use of that data by certain genetic testing companies for commercial purposes and the individual's property right in DNA; authorizing a civil p...

Pennsylvania Coverage and reimbursement Approved

An Act amending the act of May 17, 1921 (P.L.682, No.284), known as The Insurance Company Law of 1921, in casualty insurance, further providing for coverage for mammographic examinations and diagnost...

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Additional Resources

Cornell Legal Information Institute
This website allows users to search for Federal and state laws and regulations. NHGRI’s Genome Statute and Legislation Database does not include regulations.

LawSeqSM Database
Developed at the University of Minnesota and Vanderbilt University Medical Center, this database allows users to search federal and state statutes, regulations, and reported judicial decisions. The database allows searches by jurisdiction (federal, state, and individuals states), source type, topic, and open text. This resource was developed by a project funded by NHGRI and the National Cancer Institute (NCI) on “LawSeqSM: Building a Sound Legal Foundation for Translating Genomics into Clinical Application” (grant #: R01HG008605; Susan M. Wolf,. Ellen Wright Clayton, and Frances Lawrenz, principal investigators). The team keeps this database up to date.

National Society of Genetic Counselors
To find information about state genetic counselor licensing laws, visit the National Society of Genetic Counselors’ website. NHGRI’s Genome Statute and Legislation Database does not include state laws related to genetic counseling. 

Last updated: February 8, 2024