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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 descending Summary
Maryland Privacy Enacted

Requires the University of Maryland to develop and adopt an information security and risk management program for the protection of personally identifiable information. Personally identifiable information is defined to include biometric information such as an individual's DNA. Enacted without Governor's signature 5/8/2020. Effective 10/1/2024.

South Dakota Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination, Privacy Enacted

Existing law prohibits health carriers, in determining eligibility for coverage, establishing premiums, limiting coverage, renewing coverage, or any other underwriting decision from, in connection with the offer, sale, or renewal of insurance: (1) requiring or requesting an individual or a blood relative of the individual to take a genetic test; or (2) taking into consideration the fact that a genetic test was refused by an individual or a blood relative of the individual. Amends existing law by adding life insurers and long-term care insurers to covered entities. Prohibits any company providing genetic testing directly to a consumer from sharing any genetic test, genetic information, or other personally identifiable information of a consumer with any health carrier, life insurer, or long-term care insurer without written consent from the consumer. A company that provides genetic testing may communicate with a health carrier for the purposes of payment, coordination of medical treatment, or patient care so long as such communication is compliant with the Health Insurance Portability and Accountability Act and only used for the purposes permitted. 3/29/2021 Signed by the Governor. Effective 1/1/2022.

Connecticut Privacy Enacted

Creates a task for concerning consumer privacy. The introduced version of the bill was amended to create a task force rather than set forth certain requirements pertaining to the privacy of personal information such as DNA. Signed by the Governor 7/9/2019.

Michigan Health Insurance Nondiscrimination Enacted

Amends the state law pertaining to genetic_discrimination in health insurance. The bill removes the provision in the statutes that states, "This section does not prohibit an insurer of expense-incurred hospital, medical, or surgical policy or certificate to answer questions concerning family history." 7/13/2016 Approved by the Governor.

Vermont Privacy Enacted

Requires (1) the State Court Administrator for the Judicial Branch; (2)the Director of Information Technology for the Legislative Branch; and (3) the Chief Data Officer within the Agency of Digital Services and the Chief Records Officer within the Office of the Secretary of State for the Executive Branch to conduct a data privacy inventory for their respective branches of government. The inventory must address the collection and management of personally identifiable information, including genetic information. Requires a report to the legislature on or before January 15, 2021. Signed by the Governor on March 5, 2020.

California Health Insurance Nondiscrimination Enacted

This bill requires carriers and health care service plans offering plan contracts in the individual market, other than individual grandfathered plan coverage, to offer to the responsible party for a child coverage for the child that does not exclude or limit coverage due to any preexisting condition of the child. A health care service plan may not condition the issuance or offering of individual coverage on certain factors, including genetic information. Signed by the Governor on September 30, 2010.

Louisiana Employment Nondiscrimination Enacted

Retains present law and extends the definition of "discriminatory practice in connection with employment" to include all of the discrimination statutes, which would add veterans, pregnancy, childbirth, and related medical conditions, sickle cell traits, and genetic information. Signed by the Governor on June 19, 2014.

New York Privacy Enacted

Directs the director of the office of information technology services to conduct a study on the use of biometric identifying technology. Prohibits the use of biometric identifying technology in schools until July 1, 2022 or until the commissioner of education authorizes such purchase or utilization, whichever occurs later. Biometric identifier is defined to include a DNA sequence. 1/25/2021 Substituted by A954. 1/28/2021 Signed by the Governor. Effective immediately.

Georgia Health Insurance Coverage Enacted

Requires the state employees' health insurance and benefit plan to cover mammograms and breast imaging for individuals at high risk for breast cancer. Individuals at high risk include those with a known BRCA 1 or 2 mutation based on genetic testing or with a first degree relative with known mutation. Act 587 Effective 1/1/2021.

Nevada Employment Nondiscrimination Enacted

Adds genetic information to the list of categories included in an apprenticeship agreement for which discrimination is prohibited. Requires the Office of Workforce Innovation to suspend for one year the right of any employer, association of employers or organization of employees acting as agent for an employer to participate in a program under the provisions of apprenticeship program after notice and hearing, finds that the employer, association or organization has discriminated against an individual based on genetic information. June 5, 2019 Approved by the Governor. Chapter 377.

California Other Topics Enacted

Prohibits a person from selling a gene therapy kit unless the seller includes a notice on the seller�s internet website that is displayed to the consumer prior to the point of sale, and on a label on the package, stating that the kit is not for self-administration. Chaptered by Secretary of State. Chapter 140, Statutes of 2019. Effective January 1, 2020.

Maine Privacy Enacted

Protects the personal information, including genetic information, pertaining to state employees. Signed by the Governor on June 20, 2019.

Oklahoma Health Insurance Nondiscrimination, Research Enacted

This bill modifies the state Genetic Information Nondiscrimination in Insurance Act. Topics addressed by the modifications include definitions, discrimination in health insurance based on genetic information, and prohibitions for requesting and requiring genetic a genetic test with exceptions for research if conducted in compliance with the Common Rule and certain criteria are met. Approved by the Governor on 5/10/2010.

Arizona Health Insurance Nondiscrimination Enacted

This bill amends existing law that prohibits health benefit plans from terminating coverage based on a health status-related factor, including genetic information, by adding a group disability policy or a certificate of insurance for a group disability policy that is not issued in the state of Arizona to the definition of "health benefit plan." Signed by the Governor on April 28, 2008.

Iowa Employment Nondiscrimination Enacted

This bill adds definitions to the genetic nondiscrimination in employment law. Signed by the Governor April 29, 2010.

New York Other Topics Enacted

A Transportation Network Company (TNC) may not discriminate against passengers or potential passengers on the basis of a genetic predisposition. TNC drivers must comply with the anti-discrimination law. 4/20/2017 Signed by the Governor Chapter 58.

Colorado Employment Nondiscrimination Enacted

This bill prohibits the reduction of an employees permanent total disability when the disability is a result of a work-related injury or a work-related injury combined with a congenital, genetic or similar conditions except that the law does not apply to reductions in recovery or apportionment allowed pursuant to Colorado Supreme Court decision in Anderson v. Brinkhoff, 859 P.2d 819, (Colo. 1993). Signed into law June 2, 2008.

Maryland Other Topics Enacted

Prohibits a hospital from withholding financial assistance or from denying a patient's application for financial assistance based on genetic information. Enacted without Governor's signature 5/8/2020. Effective 10/1/2020.

Tennessee Health Insurance Nondiscrimination Enacted

Prior to amendment, this bill exempt insurance pools created by an association of private, not-for-profit educational institutions that has been in existence for at least 25 years from the provisions governing genetic information nondiscrimination. This language was removed from the final version of the bill, which was signed by the Governor May 15, 2007.

Connecticut Other Lines of Insurance Nondiscrimination Enacted

Prohibits insurers, health care centers and fraternal benefit societies from, in connection with the issuance, withholding, extension or renewal of an annuity or an insurance policy for life, credit life, disability, long-term care, accidental injury, specified disease, hospital indemnity or credit accident insurance: (1) requesting, requiring, purchasing or using information obtained from an entity providing direct-to-consumer genetic testing without the informed written consent of the individual who has been tested; (2) conditioning insurance rates, the provision or renewal of insurance coverage or benefit or other conditions of insurance for an individual on a requirement or agreement that the individual undergo genetic testing; and (3) conditioning insurance rates, the provision or renewal of insurance coverage or benefit or other conditions of insurance for an individual on the results of any genetic testing of a member of the individual's family unless the results are contained in the individual's medical record. 7/7/2021 Signed by the Governor. Effective October 1, 2021.

Minnesota Privacy Enacted

Relates to consumer data privacy. Establishes business obligations regarding: (1) collection and disclosure of personal information; and (2) sale of personal information to third parties. Gives various rights to consumers regarding personal data. Personal information includes biometric information such as genetic information. Carries over to 2022 session.

Virginia Employment Nondiscrimination Enacted

Prohibits a sponsor of a registered apprenticeship program from discriminating against an apprentice or applicant for apprenticeship on the basis of various factors, including genetic information. 4/22/20 House: Enacted, Chapter 1228. Effective 7/1/20.

California Research Enacted

This bill amends existing law on the protection of human subjects, which provides an exemption until January 1, 2011 for any medical experimental treatment that benefits a patient subject to a life-threatening emergency if prescribed conditions are met. This bill provides that this exemption remains in effect until January 1, 2014. Signed by the Governor July 15, 2010.

Louisiana Health Insurance Nondiscrimination Enacted

Amends the genetic nondiscrimination in health insurance statute by establishing exemptions to the law. The bill provides that the requirements under existing law do not apply to genetic information obtained: (1) For treatment, payment, and healthcare operations by an insurer consistent with the federal Health Insurance Portability and Accountability Act (HIPAA) and its related regulations. (2) For maintenance of information by an insurer in accordance with record retention requirements. 5/10/2016 Signed by the Governor. Becomes Act No. 58. Effective 8/1/2016.

New York Other Topics Enacted

Prohibits the state, or any agency or bureau, or any other entity from denying a refugee resettlement anywhere within the state based on any criterion, method of administration, or practice that has the purpose or effect of discriminating on the basis of various factors, including predisposing genetic characteristics. Carries over to 2022.

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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