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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
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. Carries over to 2022.

Massachusetts Privacy Pending

Amends statute to protect personal information under the security breach law. Adds genetic information to the scope of information covered under the law. Referred to the Senate committee on Advanced Information Technology, the Internet and Cybersecurity. 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.

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.

Massachusetts Privacy Pending

Amends statute to protect biometric information under the security breach law. Adds biometric indicator or any unique biological attribute or measurement that can be used to authenticate the identity of an individual, including genetic information, to the scope of information covered under the law. 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.

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.

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.

Minnesota Privacy Pending

Provides various rights to consumers regarding personal data. Requires certain businesses to conduct and document a data protection assessment of processing activities involving personal data, including sensitive data. Requires data controllers to obtain consent from consumers before processing sensitive data. 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 session.

Minnesota Health Insurance Coverage Pending

Requires every policy, plan, certificate, or contract referred to in subdivision that provides coverage to a Minnesota resident to provide coverage for all diagnostic and preventive screenings and tests related to breast cancer, including but not limited to genetic testing, breast examination, mammography, magnetic resonance imaging, digital breast tomosynthesis, ultrasound, thermography, biopsy, and other breast cancer screening tests currently being evaluated by the federal Food and Drug Breast Cancer research Foundation. 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.

Minnesota Other Topics Pending

Establishes a grant program within the health department to award grants to persons, organizations, and entities to fund research studies on the evidence needed to: (1) support payer reimbursement and funding of pharmacogenomics (PGx) testing; (2) determine and validate new PGx variants in diverse populations such as Native Americans and Somali groups; (3) determine ethical, legal, and social implications of PGx; (4) determine the technical aspects needed to protect data and privacy as it relates to PGx; and (5) determine the education needed for successful PGx implementation. Carries over to 2022 session.
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Minnesota Privacy Pending

Provides various rights to consumers regarding personal data. Requires certain businesses to conduct and document a data protection assessment of processing activities involving personal data, including sensitive data. Requires data controllers to obtain consent from consumers before processing sensitive data. 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 session.

Minnesota Other Topics Pending

Establishes a grant program within the health department to award grants to persons, organizations, and entities to fund research studies on the evidence needed to: (1) support payer reimbursement and funding of pharmacogenomics (PGx) testing; (2) determine and validate new PGx variants in diverse populations such as Native Americans and Somali groups; (3) determine ethical, legal, and social implications of PGx; (4) determine the technical aspects needed to protect data and privacy as it relates to PGx; and (5) determine the education needed for successful PGx implementation. Carries over to 2022 session.

Minnesota Health Insurance Coverage Pending

Requires every policy, plan, certificate, or contract referred to in subdivision that provides coverage to a Minnesota resident to provide coverage for all diagnostic and preventive screenings and tests related to breast cancer, including but not limited to genetic testing, breast examination, mammography, magnetic resonance imaging, digital breast tomosynthesis, ultrasound, thermography, biopsy, and other breast cancer screening tests currently being evaluated by the federal Food and Drug Breast Cancer research Foundation. 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.

Minnesota Genetic data storage/privacy/sharing (industry), Lab Developed Tests Introduced

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

Minnesota Lab Developed Tests Pending

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

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.

New Jersey Coverage and reimbursement Introduced

Requires health_insurance_coverage of preimplantation genetic testing with in vitro fertilization under certain conditions.

New Jersey Coverage and reimbursement Introduced

Requires health_insurance_coverage of prenatal genetic test during first trimester of pregnancy.

New Jersey Coverage and reimbursement Introduced

Requires health_insurance_coverage of prenatal genetic test during first trimester of pregnancy.

New Jersey Coverage and reimbursement Introduced

Requires health insurers to cover additional mammogram examinations and genetic testing and counseling under certain circumstances.

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.

Displaying 26 - 50 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