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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 Summary Sort descending
Maryland Privacy Died

This bill amends the Personal Information Protection Act, which governs the use of personal information contained in the records of certain businesses. The definition of personal information is amended to include an individual's unique biometric or genetic print. In the Senate. Died.

Virginia Employment Nondiscrimination Died

This bill amends the state employment genetic nondiscrimination law by adding the Commonwealth or any of its agencies, institutions, or political subdivisions, or any public body to the list of entities covered under the law. Measure failed.

Connecticut Employment Nondiscrimination Died

This bill amends the state genetic nondiscrimination law for employment by creating an exemption for state or local law enforcement, the department of public safety and the division of scientific services that allows those entities to request or require employees to provide genetic information for the purpose of detecting contamination of samples examined by the division of scientific services. Measure failed.

Oregon Health Insurance Nondiscrimination, Privacy Enacted

This bill amends the state genetic privacy law by allowing health insurers to retain or disclose genetic information without written authorization if (1) the retention is for treatment, payment or health care operations by the insurer; and (2) the disclosure is in accordance with ORS 746.607 (3). Signed by the Governor July 17, 2007.

Oregon Health Insurance Nondiscrimination, Privacy Died

This bill amends the state genetic privacy law by changing retention and disclosure provisions that apply to health insurers. Measure failed.

Oregon Privacy Enacted

This bill amends the state genetic privacy law by designating the Oregon Health Authority (previously the Department of Health and Human Services) as the body responsible for certain provisions of the law. Signed by the Governor June 26, 2009.

North Dakota Use of Residual Newborn Screening Specimens Enacted

This bill amends the statute that allows the health council to authorize the use of newborn metabolic screening tests for legitimate research purposes by broadening the term "newborn metabolic screening tests" to include "newborn metabolic and genetic disease screening tests." Signed by the Governor April 26, 2011.

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.

Minnesota 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 May 22, 2009.

Michigan Health Insurance Nondiscrimination, Research Died

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. Measure failed.

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.

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.

Louisiana Employment Nondiscrimination Died

This bill changes the person in charge of promulgating regulations for genetic monitoring from the executive director of the Louisiana Workforce Commission to the chairman of the Louisiana Commission on Human Rights. Measure failed.

California Research Enacted

This bill continue the exemption to informed consent requirements for human subjects in the event of a life-threatening emergency indefinitely. The existing exemption is set to expire on January 1, 2014. Approved by the Governor on Oct. 4, 2013.

Georgia Employment Nondiscrimination, Other Lines of Insurance Nondiscrimination, Privacy Died

This bill creates guidelines such as consent requirements for the creation and storage of biometric information, which is defined to include DNA samples. The bill also prohibits life insurers from requiring genetic information to determine an applicants eligibility or rates to be charged for life insurance; however, any pre-existing genetic information must be supplied to the insurance company upon application. The bill forbids employers or employment agencies from using information derived from genetic testing for identification purposes or as a condition of employment. The bill provides remedies for individuals whose genetic information is inappropriately used. Measure failed.

Minnesota Privacy, Research Died

This bill creates personal property rights human biological specimens, defined as tissues, organs and body parts from which DNA may be isolated and requires written informed consent for the use of biological specimens in medical or genetic research. Consent forms must provide at least three options, including consent for a specific research project, consent for future research projects that are yet undefined, or consent for future research projects that are yet undefined, contingent on the research entity returning to seek specific written informed consent if the project is or could be considered controversial. The bill allows limited use of biological specimens for the calibration of laboratory equipment. Measure failed.

Vermont Privacy Died

This bill creates personal property rights to genetic information. The bill also prohibits disclosure of genetic information without informed written consent. Measure failed.

Massachusetts Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination, Privacy, Research, Use of Residual Newborn Screening Specimens Died

This bill creates the Genetic Bill of RIghts. Genetic information is declared the exclusive property of the individual from whom the information is obtained. The bill also prohibits disclosure of genetic information without informed written consent. The bill excludes newborn screening blood specimens from the definition of genetic information. The bill also excludes research from consent requirements when genetic information is held by particular entities if the information is confidential research information for use in epidemiological or clinical research conducted for the purpose of generating scientific knowledge about genes or learning about the genetic basis of disease or for developing pharmaceutical and other treatments of disease. Measure failed.

Mississippi Health Insurance Nondiscrimination Died

This bill creates the Genetic Information Nondiscrimination in Health Insurance Act, which prohibits health benefits plans from denying, refusing or canceling health insurance benefits or coverage on the basis of genetic information or a request or receipt of genetic services. The bill also prohibits health benefit plan insurers from requesting or requiring a genetic test and from disclosing genetic information without prior written authorization. Penalties for violations are set forth. Measure failed.

Mississippi Health Insurance Nondiscrimination, Privacy Died

This bill creates the Genetic Information Nondiscrimination in Health Insurance Act, which prohibits health benefits plans from denying, refusing or canceling health insurance benefits or coverage on the basis of genetic information or a request or receipt of genetic services. The bill also prohibits health benefit plan insurers from requesting or requiring a genetic test and from disclosing genetic information without prior written authorization. Penalties for violations are set forth. Measure failed.

Mississippi Health Insurance Nondiscrimination Died

This bill creates the Genetic Information Nondiscrimination in Health Insurance Act, which prohibits health benefits plans from denying, refusing or canceling health insurance benefits or coverage on the basis of genetic information or a request or receipt of genetic services. The bill also prohibits health benefit plan insurers from requesting or requiring a genetic test and from disclosing genetic information without prior written authorization. Penalties for violations are set forth. Measure failed.

West Virginia Employment Nondiscrimination, Health Insurance Nondiscrimination, Privacy, Research Died

This bill creates the Genetic Information privacy Act. Genetic testing and genetic information derived from testing may be released only to the individual tested or people specifically given written authorization to receive the information by the individual. Accident and health insurers may not request or seek information derived from genetic testing. If the federal government or others propose guidelines, the bill authorizes the insurance commissioner to propose rules to authorize further disclosure of information derived from genetic testing for insurance purposes beyond what is permitted in the legislation. The bill requires employers to treat information derived from genetic testing in a manner consistent with federal law, including but not limited to the Americans with Disabilities Act. Exclusions under the definition of genetic testing includes research governed by the Common Rule, tests conducted purely for research, tests for somatic as opposed to heritable mutations, tests where direct personal identifiers that reveal the patients identity are encoded or encrypted and tests that are composed of de-identified or anonymized information. Penalties for violations are set forth. Measure failed.

West Virginia Employment Nondiscrimination, Health Insurance Nondiscrimination, Privacy, Research Died

This bill creates the Genetic Information privacy Act. Genetic testing and genetic information derived from testing may be released only to the individual tested or people specifically given written authorization to receive the information by the individual. Accident and health insurers may not request or seek information derived from genetic testing. If the federal government or others propose guidelines, the bill authorizes the insurance commissioner to propose rules to authorize further disclosure of information derived from genetic testing for insurance purposes beyond what is permitted in the legislation. The bill requires employers to treat information derived from genetic testing in a manner consistent with federal law, including but not limited to the Americans with Disabilities Act. Exclusions under the definition of genetic testing includes research governed by the Common Rule, tests conducted purely for research, tests for somatic as opposed to heritable mutations, tests where direct personal identifiers that reveal the patients identity are encoded or encrypted and tests that are composed of de-identified or anonymized information. Penalties for violations are set forth. Measure failed.

Alabama Privacy Died

This bill creates the Genetic Information privacy Act. The bill establishes procedures for obtaining, disclosing and storing genetic information as well as penalties for unlawful disclosure. Measure failed.

California Privacy, Research Died

This bill creates the Genetic Information privacy Act. The bill prohibits any person from obtaining, analyzing, or disclosing genetic information without the written authorization of the individual to whom the information pertains and requires a separate written authorization for each separate disclosure of an individual's genetic information, with some exceptions such as for law enforcement. The bill permits disaggregated and anonymized data to be used in the manner specified that was collected before the bill's enactment without the authorization described above. The bill also permits the use of disaggregated and anonymized data, as specified, if written authorization is obtained and the data is used for a purpose authorized by the individual to whom the information pertains. Measure failed.

Mississippi Health Insurance Nondiscrimination Died

This bill creates the genetic nondiscrimination in health insurance act. No health benefit plan may cancel, deny or refuse to renew benefits or coverage based on genetic information. This bill also places restrictions on health benefit plan's ability to request or require disclosure of genetic information. Measure failed.

New York Employment Nondiscrimination, Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Died

This bill creates the genetics advisory council. The council, if created, will study and make recommendations on various issues, including unfair discrimination by employers and insurers. Measure failed.

New York Employment Nondiscrimination, Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Died

This bill creates the genetics advisory council. The council, if created, will study and make recommendations on various issues, including unfair discrimination by insurers and employers. Measure failed.

Ohio Health Insurance Nondiscrimination Died

This bill creates the Ohio Health Benefit Exchange. The exchange must meet the minimum requirements of the Patient Protection and Affordable Care Act of 2010. Died.

Oregon Health Insurance Nondiscrimination Died

This bill creates the Oregon Health Insurance Exchange and prohibits the treatment of genetic information in the absence of a diagnosis as a pre-existing condition in the exchange. Measure failed.

Oklahoma Privacy, Use of Residual Newborn Screening Specimens Enacted

This bill creates the Parents' Bill of Rights. Rights under the bill include the right to consent in writing before any record of a minor childs blood or DNA is created, stored or shared, except as required by Sections 1-516 (pertaining to syphilis) and 1-524.1 (pertaining to testing arrested persons for sexually transmitted infections and HIV) of Title 63 of the Oklahoma Statutes, or unless authorized pursuant to a court order. Signed by the Governor on May 12, 2014.

New York Health Insurance Nondiscrimination Died

This bill defines the term "genetic predisposition" for purposes of individual and small group health insurance policies, requires that genetic predisposition be disregarded in community rating, and provides that no pre-existing condition exclusion in such a policy shall exclude coverage on the basis of any genetic predisposition. Measure failed.

Illinois Health Insurance Nondiscrimination Died

This bill deletes provisions in the statutes related to pre-existing conditions and the treatment on genetic information as such a condition. Measure failed.

New Mexico Employment Nondiscrimination Died

This bill enacts the Uniform Protection of Genetic Information in Employment Act on employee access to genetic information, confidentiality and retention of genetic information and disclosure of genetic information. Measure failed.

New York Employment Nondiscrimination, Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Died

This bill establishes a genetics advisory council to study various topics, including the use of any genetic test by insurers, employers or educational institutions, including the potential for compromising the individual liberties and civil rights of individuals or causing individuals to suffer unfair discrimination. Died.

Texas Privacy Died

This bill establishes a personal property right to DNA samples. A person may not, without the informed, written consent of the individual or the individual's legal guardian or authorized representative: (1) collect a DNA sample from an individual; (2) perform a genetic test on an individual's DNA sample; or (3) retain an individual's DNA sample, with certain exceptions. Died.

South Dakota Privacy Died

This bill establishes certain rights of parents regarding the upbringing, education, health care, and mental health care of their children and provides certain penalties for the violation of those rights. Rights set forth include the right to consent in writing before any record of a minor child's blood or deoxyribonucleic acid is created, stored, or shared. Died.

New Hampshire Privacy Died

This bill establishes procedures for protecting the privacy of student and teacher personally-identifiable data, including DNA. As of October 30, 2014, Interim Study Report: Recommended for Legislation in 2014 (Vote 15-0).

Maryland Other Topics, Privacy Enacted

This bill establishes that a certain forensic genetic genealogical DNA analysis and search may not be initiated without certifying certain information before a court and obtaining a certain authorization from the court; prohibits certain biological samples subjected to certain forensic genetic genealogical profile analysis to be used to determine certain information about a certain donor; requires the Department of Public Safety and Correctional Services to produce a certain annual report; etc.

New York Privacy Died

This bill establishes the Medicaid identification and anti-fraud biometric technology pilot program. Biometric technologies includes, but is not limited to, DNA and other identifiers. Died.

New York Privacy Died

This bill establishes the Medicaid identification and anti-fraud biometric technology pilot program. Biometric technologies includes, but is not limited to, DNA and other identifiers. Died.

Minnesota Use of Residual Newborn Screening Specimens Died

This bill excludes the health department's collection, use, storage and dissemination of genetic information and blood specimens for testing infants for heritable and congenital disorders from the law governing genetic information collected by a government entity. The bill also requires that parents are provided information about how specimens may be used and allows parents to opt out of public health studies or research. Measure failed.

Minnesota Use of Residual Newborn Screening Specimens Died

This bill excludes the health department's collection, use, storage and dissemination of genetic information and blood specimens for testing infants for heritable and congenital disorders from the law governing genetic information collected by a government entity. The bill also requires that parents are provided information about how specimens may be used and allows parents to opt out of public health studies or research. Measure failed.

Texas Privacy Died

This bill gives an individual property rights to his or her DNA sample. A person may not collect a DNA sample, perform a genetic test or retain a DNA sample, with few exceptions such as for law enforcement purposes. Measure failed.

Iowa Privacy Died

This bill modifies a provision related to personal information in the event of a security breach of computerized data. The definition of personal information is amended to include a deoxyribonucleic acid profile. Died.

Iowa Privacy Died

This bill modifies a provision related to personal information in the event of a security breach of computerized data. The definition of personal information is amended to include a deoxyribonucleic acid profile. Died.

Minnesota Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Died

This bill modifies the definition of genetic test under the Genetic Insurance Discrimination Act and adds a new section restricting the use of genetic information in individual and group life, disability income and long-term care insurance. For underwriting and ratemaking purposes, these insurers may not request or require a genetic test, use genetic test results other than those in the medical record or use genetic test results in the medical record without claims experience, substantial data or actuarial justification. Measure failed.

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.

Nevada Research Died

This bill prescribes the requirements for surrogate decision makers to give informed consent for certain human subject research. Measure failed.

Georgia Health Insurance Nondiscrimination Died

This bill prohibits a health group cooperative from excluding a small employer based on a health status-related factor, including genetic information in relation to an employee or dependent of an employee. Measure failed.

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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