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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
Ohio Health Insurance Coverage Enacted

Requires the state Medicaid program, individual health insurers and group health insurers to cover breast cancer screening for women meeting certain conditions, including those who have a genetic predisposition to breast cancer. Carries over to 2022.

Florida Privacy Enacted

Creates the Parents' Bill of Rights. Parental rights include the right to consent in writing before any record of his or her minor child's blood or deoxyribonucleic acid (DNA) is created, stored, or shared, except as required by general law or authorized pursuant to a court order. 6/29/21 Approved by the Governor. Effective 7/1/2021.

Missouri Use of Residual Newborn Screening Specimens Enacted

Unless otherwise directed under this section, a biological specimen may be released for purposes of anonymous scientific study. At the time of newborn screening specimen collection, the parent or legal guardian of the child from whom a biological specimen was obtained may direct the department to: (1) return the specimen after all tests have been performed; (2) destroy the specimen; or (3) store a specimen but do not release is for anonymous study. Signed by the Governor July 13, 2007

Wisconsin Health Insurance Nondiscrimination Enacted

This bill amends statute section 631.89 (2) (bm) related to requesting or requiring genetic information from health care providers by amending the definition of covered providers to include providers as defined in section 146.81 (a) to (p). Report approved by the Governor with partial veto June 26, 2009 (section pertaining to genetic testing unaffected by partial veto)

California Health Insurance Nondiscrimination Enacted

Authorizes an association of employers to offer a large group health care service plan contract or large group health insurance policy to small group employer members of the association consistent with federal Employee Retirement Income Security Act of 1974, if certain requirements are met. A policy or contract that is offered to or covers a small employer may not establish rules for eligibility, including continued eligibility, of an individual, or dependent of an individual, to enroll under the terms of the policy or contract based on various health status-related factors such as genetic information. 10/9/2021 Approved by the Governor. Effective 1/1/2022.

Maryland Health Insurance Nondiscrimination Enacted

The provision in the original version of the bill pertaining to the use of genetic information by carriers was amended. The enacted legislation establishes a workgroup on maintaining the protections established by the Affordable Care Act. May 13, 2019 Approved by the Governor - Chapter 417. Effective October 1, 2019.

South Carolina Health Insurance Nondiscrimination, Privacy, Research Enacted

This bill amends existing statute sections and creates new statute sections pertaining to health_insurance_nondiscrimination, genetic privacy, research issues and enforcement of these provisions. Signed by the Governor on June 7, 2010.

Illinois Health Insurance Coverage Enacted

An individual or group health care service plan contract that is issued, amended, delivered, or renewed on or after January 1, 2022 may not require prior authorization for biomarker testing for an insured with advanced or metastatic stage 3 or 4 cancer, nor shall prior authorization be required for biomarker testing of cancer progression or recurrence in the insured with advanced or metastatic stage 3 or 4 cancer. Biomarker testing is defined as analysis of tissue blood or fluid specimen for the presence of a biomarker. Biomarker testing includes, but not limited to, single-analyte tests, multiplex tests, and partial or whole genome sequencing. 7/30/21 Governor approved. Effective 1/1/2022.

New York Other Topics Enacted

Establishes a Hate Crime Task Force. The task force will issue reports and publications in conjunction with the Division on Human Rights to combat discrimination based on a variety of factors, including genetic predisposition status. 04/20/2017 Signed by the Governor Chapter 55.

Connecticut Research, Use of Residual Newborn Screening Specimens Enacted

Requires that all research proposed to be conducted using personally identifiable information in the newborn screening system or requiring contact with affected individuals shall be reviewed and approved in advance by the health commissioner. 6/23/2017 Signed by the Governor. Effective 10/1/2017.

Michigan Health Insurance Nondiscrimination, Research Enacted

This bill applies to insurers that provide Medicare supplement policies or certificates only. Denying or conditioning the issuance or effectiveness of insurance, including pre-existing condition exclusions, on the basis of genetic information is prohibited. These insurers of these policies or certificates may not (1) discriminate with respect to pricing on the basis of genetic information, (2) request or require an individual or family member to undergo a genetic test (with an exception regarding requesting a test), or (3) use the manifestation of disease in an individual as genetic information about another group members and to further increase premiums for the group. Insurers may request a genetic test from an individual or family member only if the request is pursuant to research that applies to the Common Rule and other criteria are met. Approved by the Governor December 31, 2009.

Utah Privacy Enacted

Enacts the Genetic Information privacy Act. Requires a direct-to-consumer genetic testing company to:
(1) provide a consumer clear information regarding the company's collection, use, and disclosure of genetic data;
(2) provide a consumer a publicly available privacy notice; (3) obtain a consumer's consent for certain collection, use, or disclosure of the consumer's genetic data; (4) protect a consumer's genetic data; (5) allow a consumer to access and delete the consumer's genetic data; and (6) upon request, destroy a consumer's biological sample. Prohibits a direct-to-consumer genetic testing company from disclosing a consumer's genetic data to certain persons. 3/17/2021 Signed by the Governor. Effective 5/5/2021.

California Health Insurance Nondiscrimination Enacted

This bill requires an issuer of a Medicare supplement contract, policy or certificate to adhere to the requirements imposed by the federal Genetic Information Nondiscrimination Act of 2008. Approved by the Governor July 2, 2009.

Louisiana Coverage and reimbursement Enacted

Provides for health_insurance_coverage of genetic testing for diseases and other medical conditions.

New York Other Topics Enacted

Requires the state university of New York to issue a request for proposals to partner with hospitals both within the state university of New York and other not-for-profit hospitals and non-profit higher education research institutions to map the genomes of individuals suffering from or at risk of Alzheimer's. 4/3/2020 Signed by the Governor.

California Privacy Enacted

Grants consumers the right to request a business to disclose the categories and specific pieces of personal information that it collects about the consumer; the categories of sources from which that information is collected; the business purposes for collecting or selling the information; and the categories of 3rd parties with which the information is shared. Biometric information, which is defined to include DNA, is considered personal information. Note: AB 375 was amended in June of 2018. Earlier versions of the bill do not address biometric information, including DNA. June 28, 2018 Signed by the Governor.

Maine Health Insurance Nondiscrimination Enacted

This bill amends current health_insurance_nondiscrimination law by deleting provisions pertaining to pre-existing condition exclusions, including those pertaining to genetic information. The amendments prohibit pre-existing condition exclusions entirely to ensure that consumer protections provided under the Affordable Care Act are codified in state law. 3/19/2019 Signed by the Governor.

Ohio Health Insurance Nondiscrimination Enacted

Amends the definition of "genetic screening or testing" used in the state health_insurance_nondiscrimination statute. Replaces "abnormalities, defects, or deficiencies," in the definition with "genotypes, mutations, or chromosomal changes." Carries over to 2022.

Florida Privacy, Research Enacted

Prohibits a person to from willfully, and without express consent: (1) collecting or retaining another person's DNA sample with the intent to perform DNA analysis; (2) submitting another person's DNA sample for analysis or conducting or procuring the conduct of another person's DNA analysis; (3) disclosing another person's DNA analysis result to a third party; and (4) selling or otherwise transferring another person's DNA sample or the results of another person's DNA analysis to third party, regardless of whether the DNA sample was originally collected, retained, or analyzed with express consent. The bill provides exemptions for certain activities such as research subject to, and conducted in compliance with, 45 C.F.R. part 46, 21 C.F.R. parts 50 and 56, or 45 C.F.R. parts 160 and 164. 6/19/2021 Approved by the Governor. Effective 10/1/2021.

Wisconsin Employment Nondiscrimination Enacted

This bill would eliminate the compensatory and punitives damages for acts of employment discrmination or unfair honesty or genetic testing. Signed by the Governor April 6, 2012.

California Privacy, Research Enacted

Creates the Genetic Information privacy Act. Requires a direct-to-consumer genetic testing company to do the following: (1) provide clear and complete information regarding the company�s policies and procedures for the collection, use, maintenance, and disclosure of genetic data; and (2) obtain a consumer�s express consent for collection, use, and disclosure of the consumer�s genetic data including, at a minimum, separate and express consent for each circumstance specified. Genetic data is defined as any data, regardless of its format, that results from the analysis of a biological sample from a consumer, or from another element enabling equivalent information to be obtained, and concerns genetic material. Genetic material includes, but is not limited to, deoxyribonucleic acids (DNA), ribonucleic acids (RNA), genes, chromosomes, alleles, genomes, alterations or modifications to DNA or RNA, single nucleotide polymorphisms (SNPs), uninterpreted data that results from the analysis of the biological sample, and any information extrapolated, derived, or inferred therefrom. Genetic data does not include deidentified data or data or a biological sample that is collected, used, maintained, and disclosed exclusively for scientific research conducted by an investigator with an institution that holds an assurance with the United States Department of Health and Human Services pursuant to Part 46 (commencing with Section 46.101) of Title 45 of the Code of Federal Regulations, in compliance with all applicable federal and state laws and regulations for the protection of human subjects in research. 10/6/2021 Approved by the Governor. Chaptered by Secretary of State. Chapter 596, Statutes of 2021. Effective January 1, 2022.

Maryland Health Insurance Nondiscrimination, Other Topics Enacted

Introduced version: Declares that it is the policy of the state to provide affordable health care to all regardless of various factors, including genetic information. Prohibits discrimination based on genetic information by a hospital; a person licensed or otherwise regulated by the Maryland Department of Health; and a person, including a health maintenance organization, that provides health benefits and has a certificate of authority from issued by the Maryland Department of Insurance. Genetic information removed from protected classes of information upon amendment. Provisions related to genetic information not present in final version of bill. Enacted without Governor's signature 5/8/2020. Effective 10/1/2020.

South Dakota Health Insurance Nondiscrimination Enacted

This bill amends the definitions used in the health_insurance_nondiscrimination law. Signed by the Governor March 8, 2011.

Illinois Health Insurance Coverage Enacted

Provides that an individual or group policy of accident and health insurance or managed care plan that is amended, delivered, issued, or renewed on or after the effective date of the amendatory Act must provide coverage for medically necessary comprehensive cancer testing and testing of blood or constitutional tissue for cancer predisposition testing as determined by a physician. Comprehensive cancer testing includes, but is not limited to, the following forms of testing: (1) targeted cancer gene panels; (2) whole-exome genome testing; (3) whole genome testing; (4) RNA sequencing; and (5) tumor mutation burden. 8/27/21 Approved by the Governor. Effective 1/1/2022.

New York Other Topics Enacted

In introduced version of the bill, 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. However, final version of the bill does not include provision related to genetic information.

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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