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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
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 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.

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.

Connecticut Other Topics Enacted

Creates a health data collaborative working group to examine and make recommendations regarding (1) precision medicine and personalized health; (2) economic growth initiatives for businesses working in certain scientific areas; (3) health data access, privacy and security initiatives; and (4) platforms for collecting health data in order to understand the interplay between genetic, behavioral and environmental factors in the incidence of disease or illness. 6/30/2017 Signed by the Governor. Effective immediately.

Michigan Health Insurance Nondiscrimination, Privacy Enacted

Requires a workgroup to develop a standard prior written authorization methodology for prescribers. If the workgroup develops a paper form, it must allow an insurer to request and require additional information beyond the form. Additional information may include patient clinical information regarding genetic tests. Signed by the Governor May 21, 2013.

Vermont Other Topics Enacted

Prohibits a large health care facility shall not discriminate on the basis of genetic information in its provision of financial assistance or in the implementation of its financial assistance policy. Carries over to 2022.

California Use of Residual Newborn Screening Specimens Enacted

This bill specifies that money from the genetic disease testing fund may be used for costs related to data management, and newborn blood collection, storage, retrieval, processing, inventory, and shipping. The health department, any entities approved by the department, and researchers shall maintain the confidentiality of patient information and blood samples in the same manner as other medical record information with patient identification and may use it only for approved research to (1) identify risk factors for children's and women's diseases;(2) research to develop and evaluate screening tests;(3) research to develop and evaluate prevention strategies; and(4) research to develop and evaluate treatments. The State Committee for the Protection of Human Subjects (CPHS) must determine if all of the if specified criteria are met for purposes of ensuring the security of a donor's personal information, before any blood samples are released pursuant for research purposes. Signed by the Governor September 25, 2010.

Louisiana Privacy, Research Enacted

This bill amends Louisianas genetic nondiscrimination in health insurance law. The definition of genetic information and genetic test is revised. The bill also prohibits health insurers from requesting, requiring or purchasing genetic information; requesting or requiring a genetic testing (with some exceptions); establishing rules for eligibility based on genetic information; adjusting premium or contribution amounts based on genetic information; or imposing a pre-existing condition exclusion based on genetic information. An insurer may request that an individual or a family member undergo a genetic test for research that complies with the Common Rule. Signed by the Governor July 7, 2009.

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. 1/28/2021 Signed by the Governor. Effective immediately.

Georgia Genetic Data & Law Enforcement Enacted

Relating to determination of paternity, so as to align evidentiary medical and genetic testing with the Uniform Parentage Act of 2017.

Nevada Employment Nondiscrimination, Health Insurance Nondiscrimination, Privacy Enacted

This bill requires health insurers to comply with the Genetic Information Nondiscrimination Act. Signed by the Governor May 29, 2009.

Wyoming Privacy Enacted

Prohibits the collection, retention and disclosure of genetic information without informed consent. Establishes requirements for the retention and destruction of genetic information. 3/16/2018 Governor Signed HEA No. 0060.

California Employment Nondiscrimination Enacted

Prohibits discrimination against apprentices or applicants for apprenticeships in the building and construction trade based on genetic information. 9/22/2018 Chaptered by Secretary of State - Chapter 675, Statutes of 2018.

Maine Other Lines of Insurance Nondiscrimination Enacted

Prohibits insurers from requesting, requiring, purchasing or using information obtained from a direct-to-consumer genetic test without consent of the individual tested. Types of insurance covered under the law would include life, credit life, disability, long-term care, accidental injury, specified disease, hospital indemnity or credit accident insurance or an annuity. June 5, 2019 Signed by the Governor. Effective 90 days after adjournment on 6/19/19.

Oklahoma Use of Residual Newborn Screening Specimens Enacted

This bill requires parental consent required to store, transfer, use or database DNA from any newborn child. Signed by the Governor May 11, 2010.

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. 10/8/21 Approved by the Governor. Effective 1/1/2022.

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.

Alaska Health Insurance Nondiscrimination Enacted

This bill requires health care insurers in the individual market to comply with genetic information nondiscrimination requirements established under 42 U.S.C. 300gg-53. Health care insurers in the group market must comply with genetic information nondiscrimination requirements established under 42 U.S.C. 300gg-1(b)(3), 42 U.S.C. 300gg-1(c) - (f), and 42 U.S.C. 300gg-91. Signed into law August 5, 2009.

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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