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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
New Jersey Privacy Died

Requires certain businesses to notify data subjects of collection of personally identifiable information and establishes certain security standards. Personally identifiable information is defined to include biometric information such as DNA. Died.

Maryland Research Died

Requiring hospital administrators to provide patients with a specified patient's bill of rights. The bill of rights addresses patient participation in research. Died.

New York Privacy Died

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. Died.

Rhode Island Privacy Died

Creates the Consumer privacy Protection Act. Establishes requirements for the collection, use, sale, retention and disclosure of personal information by businesses. Personal information is defined to include biometric information such as DNA. Died.

Washington Privacy Died

Establishes protections for student biometric information, including a DNA sequence. Died.

Massachusetts Privacy Died

The bill amends statute sections pertaining to the department of consumer affairs and business regulations relative to any person that owns or licenses personal information about a resident of the commonwealth. Changes add biometric information, including genetic information, to the types of personal information protected under the law. Died.

Massachusetts Other Topics Died

Prohibits local or state administrative, legislative or regulatory body or instrumentality from engaging in discriminatory land use practices based on a variety of factors, including genetic information. 4/11/2018 Accompanied a new draft, see H4397.

Colorado Health Insurance Coverage Died

Amends the health care coverage law for breast cancer screening by requiring coverage for a person with an increased lifetime risk of breast cancer determined by a risk factor model such as Tyrer-Cuzick, BRCAPro, or Gail. 05/02/2016 In Senate Committee on State, Veterans, & Military Affairs. Postponed Indefinitely.

Mississippi Health Insurance Nondiscrimination Died

In the group health market genetic information may not be excluded as a preexisting condition in the absence of a diagnosis of the condition related to the genet ic information. Measure failed.

Idaho Other Topics Died

Worker's compensation is payable for disability or death of an employee resulting from occupational diseases, including breast cancer, if certain criteria are met. Criteria includes: (1) diagnosis of breast cancer after five years of employment, before the age of 40, without BRCA 1 or BRCA 2 genetic predisposition; and (2) the disease must not have been revealed during an initial employment medical screening exam or during any subsequent medical review. Died.

New Jersey Privacy Died

Prohibits governmental collection of biometric identifiers without consent, including DNA. Died.

Maryland Privacy Died

This bill restricts access to, use of and retention of DNA samples and disclosure of DNA test results without consent with some exemptions. The bill also provides personal property rights to DNA samples and DNA test results and requires the health department to develop a uniform written informed consent form. Penalties are set forth for violations. Measure failed.

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.

North Dakota Privacy Died

Enacts a new chapter of the statutes relating to genetic privacy. A person may not collect a DNA sample from an individual, perform a DNA analysis on a sample, retain a DNA sample or the results of a DNA analysis, or disclose the results of a DNA analysis unless the person has first obtained the informed and written consent of the individual or of the individual's legal guardian or authorized representative, for the collection, analysis, retention, or disclosure. A DNA sample and the results of a DNA analysis performed on the sample are the exclusive property of the individual sampled or analyzed. The bill provides certain exemptions. Died.

Vermont Privacy Died

Proposes to identify a DNA sample and the results of a DNA analysis performed on the sample as the exclusive property of the person sampled or analyzed and to provide criminal and civil penalties for unlawful DNA collection, analysis, retention, or disclosure. Died.

Wisconsin Privacy Died

Establishes requirements on controllers that process consumers' personal data, including genetic data. 4/1/2020 Failed to pass pursuant to Senate Joint Resolution 1.

Arizona Privacy Died

Establishes requirements for controllers upon the receipt of a verified request from consumers to exercise their rights with respect to the processing of personal data, including genetic data for the purpose of uniquely identifying a person. Died.

Minnesota Other Topics Died

This bill requires any person who provides a specimen collection kit to a resident of Minnesota for the purpose of collecting genetic material to perform a genetic test to first provide the resident with the disclosure, as described in the legislation. The bill also requires a study to determine which companies and laboratories are providing direct-to-consumer genetic tests to Minnesota residents. Measure failed.

Florida Privacy Died

Enacts 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. Died.

Missouri Health Insurance Nondiscrimination Died

Proposes a Constitutional amendment, if approved by the voters, to provide that prohibits health plans from limiting or excluding benefits relating to any condition based on the fact that the condition is a preexisting condition or charging a different premium rate or imposing different out-of-pocket costs for the same coverage based on the fact that a person covered under the plan has a preexisting condition. Genetic information should not be treated as a preexisting condition in the absence of a diagnosis of the condition related to such information. 4/22/2021 Voted Do Pass Senate Insurance and Banking Committee. Died.

Kentucky Health Insurance Coverage Died

Establishes mandated coverage requirements of genetic testing for mutations of the BRCA1 or BRCA2 genes for insured who are at risk of breast cancer or ovarian cancer or who have been diagnosed with breast or ovarian cancer under the age of forty. Died.

New Mexico Privacy Died

Prohibits the disclosure of sensitive personal information by a state agency employee acquired by virtue of the employee's position with a state agency to anyone outside the state agency except under specified circumstances. Died.

Maryland Privacy Died

Enacts the Online Consumer Protection Act. Defines biometric information to include an individual's DNA. Died.

New York Research Died

Regulates the use of human subjects for medical research and experimentation, including subjects with mental disorders and children. Died.

Tennessee Health Insurance Nondiscrimination Died

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. The companion bill substituted with SB 343 signed by the Governor May 15, 2007.

Washington Privacy Died

Requires controller who determines the purposes and means of the processing of personal data to obtain consent prior to processing sensitive data, including genetic data. Controllers must conduct an assessment of activities pertaining to the processing of sensitive data. Died.

Massachusetts Health Insurance Coverage Died

Requires insurance coverage for mammograms and breast cancer screening if the patient has additional risk factors for breast cancer such as family history and positive genetic testing. Died.

Connecticut Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Died

Prohibits insurers, health care centers or fraternal benefit societies from purchasing information from direct-to-consumer genetic testing; requesting or requiring that a person disclose this information; or using such information in connection with the issuance, extension, renewal or withholding of an annuity, life insurance or health insurance. Insurers may not make provision of any insurance coverage, benefit, rate or term based on a requirement to undergo genetic testing or the results of a genetic test of an individual's family unless the results are in the individual's medical record. Died.

Mississippi Health Insurance Nondiscrimination Died

Prohibits health plans from denying coverage for a preexisting condition unless certain conditions are met. Genetic information may not be excluded as a preexisting condition in the absence of a diagnosis of the condition related to the genetic information. 1/30/2018 Died in Committee.

Illinois Privacy Died

Amends the School Code to add provisions concerning student and educator data privacy. Protections cover biometric records, defined to include DNA. Died.

New Jersey Privacy Died

Establishes personal property rights to DNA samples and genetic information resulting from DNA analysis. Requires consent for use of samples and information from person sampled or analyzed. Died.

Maryland Other Topics Died

Authorizes a person to advertise for, solicit business in the State for, offer, or perform direct to consumer genetic testing only if certain conditions are met. Died.

New York Privacy Died

Requires written notification to parents of infant's whose DNA or blood spots are retained. Died.

Oklahoma Other Topics Died

Prohibits discrimination based on genetic information in housing and the full and equal enjoyment of the goods, services, facilities, privileges, advantages, and accommodations of a place of public accommodation. 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.

Maryland Privacy Died

Requires certain private entities in possession of biometric identifiers or biometric information to develop a written policy, made available to the public, establishing a certain retention schedule and guidelines for permanently destroying biometric identifiers and biometric information. Biometric identifier is defined to includes a genetic print. The bill defines confidential and sensitive to include a genetic marker and genetic testing information. In the Senate - Hearing 1/27 at 1:00 p.m. Died.

California Use of Residual Newborn Screening Specimens Died

States that a newborn sample may not be used for medical research if a parent or guardian of the newborn child objects to the testing program. The bill would require the department to provide information about the testing program, and to obtain a form signed by the parent or guardian acknowledging receiving information regarding the storage, retention, and use of the newborn child�s blood sample for medical research. Died.

Minnesota Research, Use of Residual Newborn Screening Specimens Died

The bill provides options to parents regarding blood samples collected for the purpose of newborn screening, including the right to authorize in writing that the blood sample and test results may be used for public health studies or research. Died.

Florida Privacy Died

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. 4/21/2021 Senate Laid on Table, companion bill passed, see HB 241 (Ch. 2021-199) SJ 547.

Nebraska Privacy Died

This bill amends section 71-551 of the statutes on genetic testing. Proposed changes address the types of genetic tests covered under law and and consent requirements. Measure failed.

Kentucky Other Topics Died

Requires a health facility that provides perinatal care to provide each patient, upon admission or as soon thereafter as reasonably practical, written information regarding the patient's rights, including the right to be free from discrimination on the basis of genetic information. Died.

New York Health Insurance Nondiscrimination Died

This bill prohibits the use of genetic information for community rating to develop small group health insurance premiums. The bill also prohibits pre-existing condition exclusions in small group health insurance policies based on genetic predisposition. Measure failed.

Maryland Privacy Died

Amends the definition of biometric information under the Maryland Data privacy act. The definition of biometric information referring to a genetic print is stricken. The revised definition of biometric information includes physiological, biological, or behavioral characteristics, including an individual's DNA, that can be used singly, in combination with each other, or with other identifying data to establish individual identity. Died.

New York Health Insurance Coverage Died

Provides insurance coverage for colonoscopies for individuals 45 or older based on risk factors, including genetic history. 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.

West Virginia Health Insurance Coverage Died

Insurers that provide reimbursement or indemnity for laboratory or X-ray services must cover a comprehensive ultrasound screening of an entire breast or breasts if a woman is believed to be at increased risk for cancer due to positive genetic testing or other indications as determined by a woman's physician or advanced practice nurse. Died.

Massachusetts Health Insurance Coverage Died

Requires insurance coverage for magnetic resonance imaging for certain persons for the detection of breast cancer, including women who have tested positive for Breast Cancer Gene 1 or Breast Cancer Gene 2 mutations or one or more first degree relatives test positive for Breast Cancer Gene 1 or Breast Cancer Gene 2 mutations. 3/28/2016 Accompanied a study order, see H4111.

California Health Insurance Coverage Died

A health insurance policy that is issued, amended, or renewed on or after January 1, 2022, may not apply a deductible, copayment, or coinsurance to coverage for screening services for prostate cancer for an insured who meets certain criteria. A person is 40 years of age or older and who is high risk, as determined by the attending or treating health care provider meets the criteria. High risk includes, but is not limited to, a person with a prostate who is Black, has a family history of prostate cancer, has a genetic predisposition to prostate cancer, or is a veteran. Carries over to 2022.

Minnesota Privacy Died

The controller of a legal entity that conducts business in the state may not process sensitive data concerning a consumer without obtaining the consumer's consent, or, in the case of the processing of personal data concerning a known child, without obtaining consent from the child's parent or lawful guardian, in accordance with the children's online privacy protection act requirements. Sensitive data is defined to include genetic or biometric data for the purpose of uniquely identifying a person. The law does not apply to various types of information and entities such as protected health information under HIPAA and identifiable private information according to federal policy for the protection of human subjects. Died.

Hawaii Employment Nondiscrimination, Health Insurance Nondiscrimination, Privacy Died

The bill requires contractors and prospective contractors with the state or counties to comply with the Genetic Information Nondiscrimination Act of 2008. Died.

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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