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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 York Privacy Pending

Grants a consumer a right to request a business to disclose the categories and specific pieces of personal information such as biometric 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 third parties with which the information is shared. Biometric information is defined to include an individual's deoxyribonucleic acid. Carries over to 2022.

Massachusetts Health Insurance Coverage Pending

Requires certain insurers to provide coverage for screening breast ultrasound or screening breast magnetic resonance imaging examination if the patient has additional risk factors for breast cancer including, but not limited to, family history and positive genetic testing. Carries over to 2022.

New York Privacy Pending

Grants a consumer a right to request a business to disclose the categories and specific pieces of personal information such as biometric 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 third parties with which the information is shared. Biometric information is defined to include an individual's deoxyribonucleic acid. Carries over to 2022.

Massachusetts Health Insurance Coverage Pending

Requires certain insurers to provide coverage for screening breast ultrasound or screening breast magnetic resonance imaging examination if the patient has additional risk factors for breast cancer including, but not limited to, family history and positive genetic testing. Carries over to 2022.

Hawaii Privacy Pending

Amends the definition of personal information for the purpose of applying modern security breach of personal information law. Personal information is defined as an identifier in combination with one or more specified data elements. Specified data elements include a deoxyribonucleic profile. Carries over to 2022 session.

Minnesota Other Topics Pending

Requires the Minnesota Board of Pharmacy to establish a pharmacogenomics task force to evaluate and assess the current availability of pharmacogenomics statewide and to develop recommendations for making
pharmacogenomics available statewide. Carries over to 2022 session.

New York Research Pending

Regulates the use of human subjects for medical research and experimentation, including subjects with mental disorders and children. Addresses exclusion or inclusion of subjects to participate in human research based on race, ethnicity or sex. Requires reporting certain information relating to the collection of data. Provides that no greater than minimal risk non-therapeutic human research may be conducted on a child without consent of a parent or guardian. Carries over to 2022.

Massachusetts Other Topics Pending

Promotes fair housing by preventing discrimination against affordable housing based on various factors, including genetic information. Carries over to 2022.

New York Health Insurance Coverage Pending

Requires health insurers to provide coverage for expenses incurred in obtaining a colonoscopy when a subscriber has a high-risk predisposition to colon cancer based on genetic or family history. Carries over to 2022.

Massachusetts Other Topics Pending

Prohibits any unit government from directly or indirectly: (1) excluding or partially excluding from participation, disadvantaging, harming, denying one or more benefits to, or otherwise subjecting a person to discrimination based on or because of one or more of the person�s protected characteristics; or (2) adopting, implementing or without limitation otherwise approving or utilizing any program, policy or practice that has a discriminatory effect. Carries over to 2022.

Hawaii Health Insurance Coverage Pending

Requires every group policy of accident and health or sickness insurance and every individual or group hospital or medical service plan contract to provide coverage for screening to determine whether counseling and testing related to the BRCAl or BRCA2 genetic mutation is indicated and genetic counseling and testing related to the BRCAl or BRCA2 genetic mutation, if indicated. Carries over to 2022 session.

New York Health Insurance Coverage Pending

Requires health insurance policies to cover comprehensive screening for ovarian cancer, including genetic testing. Carries over to 2022.

Massachusetts Privacy Pending

Establishes privacy protections for the collection, use, retention and disclosure of biometric information by businesses in the state of Massachusetts. Biometric information is defined to include a DNA sequence. Carries over to 2022.

Washington Health Insurance Coverage Pending

Requires an osteopathic physician and, physician, physician's assistant and advanced registered nurse practitioner to refer a person who is 18 years of age or younger to a children's specialty health care facility that can provide specialized diagnostic services, including genetic testing, unless the person is currently receiving care in such a facility, if the person has experienced any neurological or physical symptoms, including but not limited to seizures or missing developmental milestones. Requires a health carrier must provide coverage for genetic testing including up to a full genome panel as determined by the ordering practitioner to identify potential causes of seizures, neurological symptoms, or other physical symptoms as determined by the health care provider in persons who are 18 years of age or younger. Carries over to 2022.

New York Employment Nondiscrimination, Other Topics Pending

Declares that it is an unlawful discriminatory practice for a hiring party to subject a model to harassment based on various characteristics, including predisposing genetic characteristics. Carries over to 2022.

Michigan Employment Nondiscrimination Pending

Requires an employer that employs 50 or more individuals at any time during the calendar year at a single work site in the state to inform employees of, and keep posted at the work site in a conspicuous place where employees may conveniently read it, a notice that includes specified information. Required notification includes a statement that it is illegal under federal law to pay employees different wages for the same work based solely on various characteristics, including genetic information. Carries over to 2022.

Minnesota Lab Developed Tests Pending

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

New York Employment Nondiscrimination, Other Topics Pending

Declares that it is an unlawful discriminatory practice for a hiring party to subject a model to harassment based on various characteristics, including predisposing genetic characteristics. Carries over to 2022.

Massachusetts Other Topics Pending

Creates a pancreatic cancer advisory council within the health department. Requires the commissioner of insurance to survey health insurers in the commonwealth to ascertain coverage benefits of genetic testing for pancreatic cancer across health insurance plans, and present findings to the committee on health care financing and the committee on financial services no later than June 30, 2022. Carries over to 2022.

Washington Privacy Pending

Creates a charter of people's personal data rights. Establishes the rights of an individual with regard to personal information. Prohibits a person or legal entity processing captured personal information in a manner that discriminates against consumer on the basis of various characteristics, including predisposing genetic characteristics. Carries over to 2022.

California Neonatal sequencing Pending

Newborn screening: genetic diseases: blood samples collected.

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.

Michigan Employment Nondiscrimination Pending

Requires an employer that employs 50 or more individuals at any time during the calendar year at a single work site in the state to inform employees of, and keep posted at the work site in a conspicuous place where employees may conveniently read it, a notice that includes specified information. Required notification includes a statement that it is illegal under federal law to pay employees different wages for the same work based solely on various characteristics, including genetic information. Carries over to 2022.

South Carolina Privacy Pending

Enacts the South Carolina Biometric Data privacy Act. Provides certain requirements for a business that collets a consumer's biometric information. Allows consumers to: (1) request the deletion of collected biometric information; and (2) prohibit the sale of biometric information. Prohibits a business from discriminating against a consumer who opts out of the the sale of biometric information. Biometric information includes DNA. Carries over to 2022.

New Hampshire Privacy Pending

Provides that an individual has an expectation of privacy in personal information, including content and usage, given or available to third-party providers of information and services, including cellular and land-line telephone, electric, water, and other utility services; Internet service providers; cable television providers; streaming services; social media providers; email service providers; banks and financial institutions; insurance companies; and credit card companies. Prohibits municipal, county, state, or federal department, agency, employee, elected official, or contractors from acquiring, collecting, retaining, or using personal information, directly or indirectly, related to customers of third-party providers of information and services located in New Hampshire except under certain circumstances. Personal information is defined to include genetic profiles and DNA/RNA data. Hearing on 3/05/2021. Carries over to 2022.

Displaying 851 - 875 of 1160

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