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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 Sort descending Primary Link Topic(s) Bill Status Summary
New York Privacy Died

Requires biometric identifies and information to be treated in a manner similar to confidential and sensitive information such as a genetic marker or genetic testing information. 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.

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.

New York Other Lines of Insurance Nondiscrimination Died

This bill prohibits denial, cancellation or alteration of a life or disability insurance policy or group life or disability insurance policy, including renewals, on the basis of any genetic testing performed on an insured, applicant or family member of insured or applicant. Measure failed.

New York Privacy Died

Requires every personal information recipient to protect the security and integrity of all personal information in their custody from unauthorized access or unauthorized use. Places strict liability on companies where breaches of security allow for personal information to be compromised. Personal information is defined to include biometric information such as DNA. Died.

New York Privacy, Research Statute

Prior informed consent is required to perform a genetic test. Further disclosures require additional consent. For medical research purposes and with approval from an institutional review board and consent, a biological sample may be retained for longer than 60 days and be used for scientific research. Samples may be used for research conducted in accordance with applicable law and regulation and pursuant to a research protocol approved by an institutional review board, if individuals who provided the samples have given prior informed consent for the use of the sample for general research purposes without restrictions, and the samples have been permanently stripped of identifying information or coded to protect the individuals identity. Upon request samples that have not already been used for research must be destroyed. Family members of a research participant may not be contacted without the consent of the individual. Additional provisions address confidentiality, the incorporation of information into medical records, disclosure and penalties for violations.

New York Health Insurance Coverage Died

Requires policies that provide coverage for hospital, surgical or medical to cover screening for ovarian cancer, including genetic testing. Additional coverage is required if genetic testing is positive. Died.

New York Privacy Pending

Enacts the NY privacy act to require companies to disclose their methods of de-identifying personal information such as biometric information, to place special safeguards around data sharing and to allow consumers to obtain the names of all entities with whom their information is shared. Biometric information is defined to include DNA. Carries over to 2022.

New York Research Died

This bill regulates the use of human subjects for medical research and experimentation, including subjects with mental disorders and children. Measure failed.

New York Privacy Died

Establishes the It's Your Data Act for the purposes of providing protections and transparency in the collection, use, retention, and sharing of personal information. Biometric information, which is defined to include DNA, is considered protected information. Died.

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 information. 4/20/2017 Signed by the Governor Chapter 55.

New York Other Topics 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.

New York Other Topics Died

Establishes an eleven member genetics advisory council. Died.

New York Privacy Died

Establishes the office of data protection and privacy for intelligence data centers to protect the privacy of personal information and biometric identifiers, including DNA. Died.

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. 1/25/2021 Substituted by A954. 1/28/2021 Signed by the Governor. Effective immediately.

New York Health Insurance Coverage Died

This bill requires accident and health insurance policies to cover the cost of genetic testing of persons with a family history of cancer when the attending physician determines such person has a significant risk of cancer. Measure failed.

New York Privacy Died

Requires biometric identifies and information to be treated in a manner similar to confidential and sensitive information such as a genetic marker or genetic testing information. Died.

New York Employment Nondiscrimination Statute

Unless it can be clearly shown that a person's unique genetic disorder, defined to include the sickle cell trait, carriers of Tay-Sachs, and carriers of Cooleys anemia only, would prevent a person from performing the particular job, no person who is otherwise qualified may be denied equal opportunities to obtain or maintain employment or to advance in position in his job solely because a person has a unique genetic disorder.

New York Research Died

This bill regulates the use of human subjects for medical research and experimentation, including subjects with mental disorders and children. Provisions include that no greater than minimal risk non-therapeutic human research may be conducted on a child without consent of a parent or guardian. Died.

North Carolina Other Topics Pending

Establishes certain rights of perinatal care patients, including the right to receive care and treatment free from discrimination based on characteristics such as genetic information. Carries over to 2022.

North Carolina Employment Nondiscrimination, Other Topics Died

Creates the Equal Employment and Equal Access to Public Accommodations Act. Declares that it is the public policy of the State to protect and safeguard the right and opportunity to all individuals to seek, obtain and hold employment without discrimination or abridgment and to enjoy fully and equally the goods, services, facilities, privileges, advantages, and accommodations of places of public accommodations free of discrimination because of race, sex, national origin, citizenship, religion, age, veteran status, genetic information, pregnancy, handicap, or disability. Declares that it is the policy of the State Board of Community Colleges, local boards of trustees of the State of North Carolina, and the Board of Governors of the University of North Carolina not to discriminate among students. Died.

North Carolina Privacy Pending

Creates the Consumer Data privacy Act of North Carolina. Prohibits data controllers from processing sensitive data concerning a consumer without obtaining the consumer's consent, or, in the case of sensitive data concerning a known child, without processing such data in accordance with the federal Children's Online privacy Protection Act. Sensitive data is defined to include the processing of genetic or biometric data for the purpose of uniquely identifying a natural person. Carries over to 2022.

North Carolina Health Insurance Nondiscrimination Enacted

This bill requires health benefit plans and insurers to comply with all applicable standards of Public Law 110-233, known as the Genetic Information Nondiscrimination Act of 2008, as amended by Public Law 110-343, and as further amended. Signed by the Governor July 31, 2009.

North Carolina Employment Nondiscrimination, Health Insurance Nondiscrimination, Other Topics, Other Lines of Insurance Nondiscrimination Died

Prohibits discriminatory housing practices based on protected status, which includes genetic information. Declares that it is the public policy of the State to protect and safeguard the right and opportunity of all individuals to seek, obtain and hold employment without discrimination or abridgement on account of certain characteristics, including genetic information. Also prohibits insurers from refusing to insure or refusing to continue to insure an individual, limit the amount, extent, or kind of coverage available to an individual, or charge an individual a different rate for the same coverage, based on genetic information. School boards also must adopt a policy to establish that the local board of education and school personnel employed by the local board may not discriminate based on genetic information. Charter and nonpublic schools may not discriminate based on genetic information. Died.

North Carolina Employment Nondiscrimination Enacted

Sets forth procedures for State employment appeals of grievances and disciplinary actions related to discrimination claims, including discrimination based on genetic information. Signed by the Governor August 21, 2013.

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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