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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
Michigan Health Insurance Nondiscrimination, Privacy Enacted

Requires a workgroup to develop a standard prior written authorization methodology for prescribers. If the workgroup develops a paper form, it must allow an insurer to request and require additional information beyond the form. Additional information may include patient clinical information regarding genetic tests. Signed by the Governor May 21, 2013.

New York Health Insurance Coverage Pending

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 thereof. Carries over to 2022.

New York Health Insurance Coverage Died

Requires accident and health insurance policies to cover the cost of genetic testing of persons with a family history of cancer. Coverage must include testing and any subsequent treatment based on the results of the test for people with a significant risk of contracting cancer. 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.

Hawaii Health Insurance Coverage Died

Requires accident and health or sickness insurers to provide coverage for genetic counseling and testing related to the BRCA1 or BRCA2 genetic mutation, if indicated. Died.

New Jersey Employment Nondiscrimination, Other Topics Died

Requires adoption of and training on anti-discrimination and anti-harassment policy by certain campaign committees. Protected category includes genetic information. Died.

Hawaii Health Insurance Coverage Died

Requires all individual accident and health or sickness insurance policies, all individual and group hospital and medical service corporation contracts, and all group or blanket disability policies that provide coverage for reproductive health to include certain services in reproductive health service coverage. The services listed include genetic screening and counseling related to BRCA1 and BRCA2 genetic mutations. Died.

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.

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.

Texas Privacy Died

Requires an individual or the individual�s authorized representative provide express consent for a person to: (1) obtain the individual �s genetic material or genetic information; (2) perform a genetic analysis of the individual or any other analysis or test of the individual that requires the individual �s genetic material; (3) retain the individual �s genetic material or genetic information; or (4) disclose, including through sale or donation, the individual �s genetic material or genetic information. 3/29/2021 Referred to House Public Health Committee. Died.

Texas Privacy Died

Requires an individual or the individual�s authorized representative provide express consent for a person to: (1) obtain the individual �s genetic material or genetic information; (2) perform a genetic analysis of the individual or any other analysis or test of the individual that requires the individual �s genetic material; (3) retain the individual �s genetic material or genetic information; or (4) disclose, including through sale or donation, the individual �s genetic material or genetic information. passed_senate. 5/17/2021 Referred to House Public Health Committee. Died.

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.

California Employment Nondiscrimination Died

Requires any contracting entity that contracts with independent contractors to provide services to, on behalf of, or through the contracting entity on a freelance or per-gig basis, or virtual platform that enables third parties, including independent contractors, to transact with one another for services, or through which independent contractors can market, promote, or advertise their services to third parties, to maintain a written policy against the discrimination of an independent contractor on the basis of genetic information and other factors. Summary based on version of bill as amended on 5/6/2020 when all language from prior introduced version of bill was stricken. Died.

Louisiana Health Insurance Coverage Enacted

Requires any health coverage plan renewed, delivered or issued for delivery in Louisiana to provide coverage for genetic or molecular testing for cancer including but not limited to tumor mutation testing, next generation sequencing, hereditary germline mutation testing, pharmacogenomic testing, whole exome and genome sequencing, and biomarker testing. 6/1/21 Signed by the Governor. Becomes Act No. 43. Effective 1/1/2022.

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

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.

Connecticut Privacy Died

Requires businesses to disclose the proposed use of any personal information and to give consumers the right to discover what personal information the business possesses. Consumers may opt out of the sale of such information. Personal information is defined to include biometric information such as DNA which can be used to identify an individual. Died.

Maryland Privacy Died

Requires certain businesses that collect a consumer's personal information to provide certain clear and conspicuous notices to the consumer at or before the point of collection. The bill defines biometric information to include an individual's DNA. In the Senate - First Reading Senate Rules. Died.

Maryland Privacy Died

Requires certain businesses that collect a consumer's personal information, including biometric information such as an individual's DNA, to provide certain clear and conspicuous notices to the consumer at or before the point of collection. Authorizes a consumer to submit a certain request for information to a business that collects the consumer's personal information. Requires a business to comply with a request for information within 45 days after receiving a request. Died.

Maryland Privacy Died

Requires certain businesses that collect a consumer's personal information, including biometric information such as an individual's DNA, to provide certain clear and conspicuous notices to the consumer at or before the point of collection. Authorizes a consumer to submit a certain request for information to a business that collects the consumer's personal information. Requires a business to comply with a request for information within 45 days after receiving a request. Died.

Maryland Privacy Died

Requires certain businesses that collect a consumer's personal information, including biometric information such as an individual's DNA, to provide certain clear and conspicuous notices to the consumer at or before the point of collection. Authorizes a consumer to submit a certain request for information to a business that collects the consumer's personal information. Requires a business to comply with a request for information within 45 days after receiving a request. Died.

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 Privacy Died

Requires certain businesses, when destroying a customers records that contain personal or private information of the customer, to take specific steps to protect against unauthorized access to or use of the information. Personal information is defined to include an individual's genetic print. Died.

Maryland Privacy Died

Requires certain businesses, when destroying a customers records that contain personal or private information of the customer, to take specific steps to protect against unauthorized access to or use of the information. Personal information is defined to include an individual's genetic print. Died.

Kentucky Privacy Died

Requires certain information holders to encrypt personally identifiable data, which is defined to include a genetic print. Information holders must report a breach of personally identifiable information to consumers. Died.

Displaying 751 - 775 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