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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
New York Research Died

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

New York Employment Nondiscrimination Died

Establishes unlawful discriminatory practices relating to models, including discrimination based on predisposing genetic characteristics. Died.

New York Health Insurance Nondiscrimination Died

Requires accident and health insurance policies to cover the cost of genetic testing of persons with a family history of cancer. Died.

New York Privacy Died

Establishes a personal information bill of rights requiring parties having custody of residents' personal identifying information to ensure the security the information. Personal information is defined to include biometric information such as DNA. Died.

New York Health Insurance Coverage Died

Requires health insurance policies to cover comprehensive screening for ovarian cancer for persons at high risk, including genetic testing. Died.

New York Health Insurance Coverage Died

Requires health insurance policies to cover comprehensive genetic screening for ovarian and prostate cancers. Died.

New York Employment Nondiscrimination Died

Prohibits discrimination or harassment based predisposing genetic characteristics of non-employees in the workplace. Died.

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. Personal information includes biometric information such as DNA. Died.

New York Research Died

Authorizes human research in compliance with federal law. Substituted by S6488. Senate substitute signed by the Governor on 9/13/19.

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 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 Health Insurance Coverage Died

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

New York Employment Nondiscrimination Died

Prohibits an employer, licensing agency, employment agency, or labor organization from subjecting an individual to discriminatory harassment based on various factors, including predisposing genetic characteristics. Prohibits subjecting domestic workers to unwelcome harassment based on genetic information. Died.

New York Employment Nondiscrimination Died

Prohibits hiring parties from subjecting a model to harassment based on various factors, including predisposing genetic characteristics. Died.

New York Health Insurance Coverage Died

Requires health insurance policies to cover comprehensive genetic screening for ovarian and prostate cancers. Died.

New York Employment Nondiscrimination Died

Prohibits an employer, licensing agency, employment agency, or labor organization from subjecting an individual to discriminatory harassment based on various factors, including predisposing genetic characteristics. Prohibits subjecting domestic workers to unwelcome harassment based on genetic information. Died.

New York Privacy Died

Imposes requirements for the collection and use of emergency health data and personal information and the use of technology to aid during the COVID-19 public health emergency. Requires entities using technology to get consent from individuals and to disclose certain information including the right to privacy and who will have access to the data. Emergency health data is defined to include genetic data. Died.

New York Employment Nondiscrimination Died

Prohibits discrimination or harassment based predisposing genetic characteristics of non-employees in the workplace. Died.

New York Employment Nondiscrimination Died

Prohibits discrimination or harassment based predisposing genetic characteristics of non-employees in the workplace. Died.

New York Privacy Died

Imposes requirements for the collection and use of emergency health data and personal information and the use of technology to aid during the COVID-19 public health emergency. Requires entities using technology to get consent from individuals and to disclose certain information including the right to privacy and who will have access to the data. Emergency health data is defined to include genetic data. Died.

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 Privacy Died

Establishes the It's Your Data Act to provide protections and transparency in the collection use retention and sharing of personal information. Personal information is defined to include biometric information such as a DNA sequence. Referred to Rules 10/28/2020. Died.

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 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, 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.

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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