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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.

State Primary Link Topic(s) Bill Status Summary
Louisiana Coverage and reimbursement Enacted

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

Maryland Coverage and reimbursement, Genetic discrimination Died

Prohibiting carriers that offer life insurance, long-term care insurance, and disability insurance policies or contracts from taking certain action regarding coverage based on whether an applicant or...

Massachusetts Neonatal sequencing Introduced

An Act relative to early intervention services for children with prenatal exposure to opioids.

Massachusetts Neonatal sequencing Introduced

An Act making appropriations for the Fiscal Year 2024 for the maintenance of the departments, boards, commissions, institutions, and certain activities of the Commonwealth, for interest, sinking fund...

Massachusetts Neonatal sequencing Introduced

An Act relative to early intervention services for children with prenatal exposure to opioids.

Massachusetts Neonatal sequencing Introduced

An Act making appropriations for the fiscal year 2024 for the maintenance of the departments, boards, commissions, institutions, and certain activities of the Commonwealth, for interest, sinking fund...

Minnesota Lab Developed Tests Pending

Direct-to-consumer genetic testing companies required to provide disclosure notices and obtain consent.

Minnesota Genetic data storage/privacy/sharing (industry), Lab Developed Tests Introduced

Direct-to-consumer genetic testing companies requirement to provide disclosure notices and obtain consent.

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.

New Jersey Coverage and reimbursement Introduced

Requires health_insurance_coverage of prenatal genetic test during first trimester of pregnancy.

New Jersey Coverage and reimbursement Introduced

Requires health insurers to cover additional mammogram examinations and genetic testing and counseling under certain circumstances.

New Jersey Coverage and reimbursement Introduced

Requires health_insurance_coverage of preimplantation genetic testing with in vitro fertilization under certain conditions.

New Jersey Coverage and reimbursement Introduced

Requires health_insurance_coverage of prenatal genetic test during first trimester of pregnancy.

Pennsylvania Genetic Data & Law Enforcement Introduced

An Act amending Title 23 (Domestic Relations) of the Pennsylvania Consolidated Statutes, adding provisions relating to establishment of parent-child relationship for certain individuals; providing fo...

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...

Rhode Island Consumer Personal Data Privacy, Coverage and reimbursement Introduced

An act relating to insurance -- accident and sickness insurance policies (mandates insurance policies, provides coverage to diagnose & treat infertility for women between 25 & 42 years, including pre...

Rhode Island Coverage and reimbursement Passed Senate

An act relating to insurance -- accident and sickness insurance policies (mandates all insurance contracts/plans/policies provide coverage for the expense of diagnosing/treating infertility for women...

Minnesota Genetic data storage/privacy/sharing (industry), Lab Developed Tests Died

Direct-to-consumer genetic testing companies requirement to provide disclosure notices and obtain consent.

Hawaii Neonatal sequencing Died

Relating to privacy. Prohibits the department of health or any recipient of individually identifiable health information of a newborn child obtained through genetic and metabolic screening tests required by law to disclose to any person other than the newborn child's parents, guardian, or other persons having custody or control of the newborn child, any individually identifiable health information of a newborn child, including disclosure to a law enforcement officer. establishes that any information obtained by a law enforcement officer in violation of this prohibition shall be deemed evidence acquired by unlawful means.

Hawaii Genetic data storage/privacy/sharing (medicine), Neonatal sequencing Died

Relating to privacy. Prohibits the department of health or any recipient of individually identifiable health information of a newborn child obtained through genetic and metabolic screening tests required by law to disclose to any person other than the newborn child's parents, guardian, or other persons having custody or control of the newborn child, any individually identifiable health information of a newborn child, including disclosure to a law enforcement officer. establishes that any information obtained by a law enforcement officer in violation of this prohibition shall be deemed evidence acquired by unlawful means.

California Neonatal sequencing Died

SB 625 would make changes to the California Newborn Screening Program.

Alabama Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Statute

Health and disability insurers may not deny applicants insurance coverage because of a diagnosis of sickle cell anemia.

Alabama Health Insurance Nondiscrimination Statute

Health benefit plans, including the Alabama Medicaid Agency, may not require a genetic test to determine if a person has a predisposition to cancer as a condition of insurability or use the results of such a test to determine insurability or discriminate with respect to rates or benefits. The statutes set forth penalties for insurance companies or health maintenance organizations that violate the law.

Alaska Privacy Statute

This statute provides protections for the privacy of DNA samples and the results of DNA analysis. DNA samples and the results of DNA analysis are the exclusive property of the person sampled or analyzed. Samples collected and analyses conducted for the DNA registry, law enforcement purposes, paternity testing, newborn screening, and emergency medical treatment are exempt. The statute sets forth civi and criminal penalties for violations of the law.

Alaska Health Insurance Nondiscrimination Statute

Health care insurers offering individual or group plans must comply with the genetic information nondiscrimination requirements established under 42 USC 300gg-53, or 42 U.S.C. 300gg-1(b)(3), 42 U.S.C. 300gg-1(c) - (f), and 42 U.S.C. 300gg-91, respectively.

Alaska Health Insurance Nondiscrimination Statute

Health care insurers in the group market may not establish rules for eligibility or continued eligibility based on genetic information or impose preexisting condition exclusions based on genetic information in the absence of a diagnosis.

Arizona Privacy Statute

Parents must consent in writing before any record of the minor child's blood or deoxyribonucleic acid is created, stored or shared, with some exceptions such as newborn screening.

Arizona Privacy, Research Statute

Information derived from genetic testing my only be released to the person tested or others with written authorization from the person tested with some exceptions, including but not limited to (1) a researcher for medical research and public health purposes, only if the research is conducted pursuant to applicable federal or state laws and regulations, (2) if the identity of the individual providing the sample is not disclosed to the person collecting and conducting research; or (3) a third person if approved by a human subjects review committee or human ethics committee, with respect to persons who are subject to a state cancer registry. The law also places restrictions on disclosure or compelling disclosure, requires consent from a parent or legal guardian of a minor to conduct genetic testing other than newborn screening, and requires written informed consent for genetic testing by health care providers with some exceptions.

Arizona Health Insurance Nondiscrimination Statute

A health care services organization may not cancel an enrollee's evidence of coverage issued on a group basis because of criteria specified in the statutes, including such health status-related factors. Genetic information is a health status-related factor.

Arizona Health Insurance Nondiscrimination Statute

Genetic information is a health status-related factor that may not be used as the basis for denial of coverage or as the basis for a pre-existing condition exclusion in the absence of a diagnosis in the individual health insurance market.

Arizona Health Insurance Nondiscrimination Statute

Accountable health plans may not (1) deny, limit or condition coverage or benefits based on health status-related factors, including genetic information or (2) impose a pre-existing condition exclusion based on genetic information in the absence of a diagnosis.

Arizona Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Statute

Life and disability insurers (disability insurance is defined in the statutes to include health insurers) may not refuse to consider an application on the basis of a genetic condition. Information about a genetic condition may not be used for underwriting or ratemaking of life and disability insurance policies unless supported by the applicants medical condition, medical history and either claims experience or actuarial projections. In the case of disability insurance the use of information about a genetic condition for underwriting or ratemaking purposes constitutes unfair discrimination in the absence of a diagnosis.

Arizona Privacy Statute

A person may not order or require the performance of a genetic test without written informed consent. Genetic test results may not be disclosed without the express consent of the subject of the test or the person authorized to consent for that person.

Arizona Employment Nondiscrimination Statute

Employers may not discriminate against an individual based on genetic test results, notwithstanding professionally developed ability tests that are not designed to discriminate because of race, color, religion, sex or national origin.

Arkansas Privacy Statute

Provides for the protection of personal information maintained by businesses, including biometric information. Biometric information is defined to include DNA.

Arkansas Employment Nondiscrimination Statute

Employers may not seek to obtain, use or require a genetic test or genetic information to distinguish between or discriminate against persons applicants or employees. Criminal and civil penalties are set forth for violations.

Arkansas Privacy, Research Statute

No individual records of subjects in genetic research studies approved by an institutional review board or conducted subject to the requirements of the federal common rule may be subpoenaed or subject to discovery in civil suits except in cases where the information in the records is the basis of the suit. These records may not be disclosed to an insurer or employer without the informed written consent of the subject. Stored tissues, including blood, that arise from surgery or other diagnostic and therapeutic steps may be disclosed for genetic or other research studies if the patients name or social security number is not attached to or included with the specimen. Identifying information may be disclosed with the informed written consent of the individual. Published results may not identify a subject unless the individual has provided specific informed consent.

Arkansas Health Insurance Nondiscrimination Statute

Insurers except those offering life, disability income and long-term care plans may not request or require an individual or family member to obtain a genetic test for the purpose of determining eligibility, establishing premiums, limiting, renewing or terminating coverage, or another other underwriting activity or condition a policy on an individual taking a genetic test.

Arkansas Health Insurance Coverage Statute

Accident and health insurance companies, hospital service corporations, health maintenance organizations, or other accident and health insurance providers must offer coverage, as an essential health benefit, for mammogram screening, mammography and breast ultrasound for the diagnosis of breast disease. Coverage is required upon the recommendation of a physician without regard to age when a woman has (1) a prior history of breast cancer, (2) her mother or sister has a history of breast cancer, (3) positive genetic testing, or (4) other risk factors.

Arkansas Health Insurance Nondiscrimination Statute

Preexisting condition exclusions may not be based on genetic information in the absence of a diagnosis. Insurers issuing group health plans may not establish rules for eligibility or continued eligibility based on a health status-related factor, including genetic information.

California Other Topics Statute

Prohibits the sale of a gene therapy kit unless the seller includes a notice on the seller�s internet website 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.

California Other Topics Statute

Prohibits any person or other entity whose business includes performing appraisals of residential real property from discriminating against any person in making available those services, or in the performance of those services, because of various characteristics, including genetic information. Requires every contract for the sale of real property to contain a notice regarding improper or illegal considerations such as genetic information in appraisal of property.

California Privacy Statute

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. On or before January 1, 2020, the Attorney General must solicit broad public participation to adopt regulations to further the requirements set forth in the law.

California Privacy Statute

Protects the privacy and security of computerized data, including personal information, owned or licensed by an agency. Genetic data is defined as any data that results from the analysis of a biological sample of an individual, or from another source 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 analysis of the biological sample or other source, and any information extrapolated, derived, or inferred therefrom.

California Other Topics Statute

This statute was amended as part of 2011 CA SB 559, referred to as CalGINA, by adding genetic information to the list of characteristics addressed in the Unruh Civil Rights Act. All people in California are considered free and equal, and no matter what their sex, race, color, religion, ancestry, national origin, disability, medical condition, genetic information, marital status, sexual orientation, citizenship, primary language, or immigration status are entitled to the full and equal accommodations, advantages, facilities, privileges, or services in all business establishments of every kind whatsoever.

California Health Insurance Nondiscrimination, Privacy Statute

A person who negligently or willfully discloses genetic test results in an individuals medical records who is applying for or enrolled in a health care service plan, except with written authorization in the format specified, is subject to fines as set forth in the statutes.

California Privacy, Research Statute

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.

California Other Lines of Insurance Nondiscrimination Statute

A person who underwrites or sells an annuity contract or contracts insuring, guaranteeing, or indemnifying against loss, harm, damage, illness, disability, or death, and any affiliate of that person or entity, shall not disclose individually identifiable information concerning the medical or genetic history of a customer for use with regard to granting credit.

California Employment Nondiscrimination Statute

These statute sections contain provisions from 2011 CA SB 559, referred to as CalGINA. The opportunity to seek, obtain, and hold employment without discrimination because of genetic information, is recognized as a civil right. It is an unlawful employment practice, unless based on a bonafide occupational qualification, to subject any employee, applicant or other person to a test for the presence of a genetic characteristic. In addition, a person in the State of California may not, on the basis of genetic information, be unlawfully denied full and equal access to the benefits of, or be unlawfully subjected to discrimination under, any program or activity that is conducted, operated, or administered by the state or by any state agency, is funded directly by the state, or receives any financial assistance from the state.

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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