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The Genome Statute and Legislation Database is comprised of state statutes and bills introduced during the 2007-2020 U.S. state legislative sessions.

Overview

NHGRI's Table of State Statutes Related to Genomics provides the total number of states that have enacted legislation on the topics in the database, together with a description of each topic. 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.

  • Overview

    NHGRI's Table of State Statutes Related to Genomics provides the total number of states that have enacted legislation on the topics in the database, together with a description of each topic. 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 Citation/Title Sort descending Topic(s) Bill Status Summary
New Hampshire 2020 State Bills
New Hampshire 2020 HB 1417
Privacy Died

Prohibits private entities from requiring an individual to disclose or provide biometric data, including DNA, as a condition of doing business with, engaging in any business activity or relationship with, or obtaining services from that private entity, unless the good, service, or activity provided by the private entity cannot be provided without the collection of biometric information from an individual.  A private entity may not collect, use, or retain the biometric information of an individual without the individual's consent and shall not condition access to its good, service, or activity on the provision of biometric data.  Died.

Maryland 2020 State Bills
Maryland 2020 SB 588
Privacy Died

Requires the University of Maryland to develop and adopt an information security and risk management program for the protection of personally identifiable information, including biometric information. Biometric information is defined as physiological, biological, or behavioral characteristics, including an individual's DNA, that can be used singly, in combination with each other, or with other identifying data to establish individual identity.  Died.

New York 2020 State Bills
New York 2020 A9506
Other Topics Enacted

Requires the state university of New York to issue a request for proposals to partner with hospitals both within the state university of New York and other not-for-profit hospitals and non-profit higher education research institutions to map the genomes of individuals suffering from or at risk of Alzheimer's.  4/3/2020 Signed by the Governor.

California 2020 State Bills
California 2020 AB 2222
Privacy Died

Requires a genealogy company, defined as a person that is not subject to HIPAA and obtains the DNA of a person through submission of a saliva sample or other methods, to display a notice in all advertising, it’s privacy policies, at the point of sale of the product, and on product packaging.  The notice must contain information about the company's privacy policy.  Died. 

Massachusetts 2020 State Bills
Massachusetts 2020 S.2820
Privacy Died

Prohibits an agency, executive office, department, board, commission, bureau, division or authority of the commonwealth or a political subdivision thereof, or any agent, contractor or subcontractor thereof, from acquiring, possessing, accessing or using any biometric surveillance system or any information derived from a biometric surveillance system operated by another entity.  Allows certain exceptions such as the use of facial recognition technology by the registrar or motor vehicles.  Biometric data is defined to include deoxyribonucleic acid.  11/30/2020 Reported out of Senate Conference Committee. See S2963 for report. Died.

Washington 2020 State Bills
Washington 2020 HB 2273
Other Topics Died

Creates a study committee on human genome editing.  Died.

Maryland 2020 State Bills
Maryland 2020 HB 1648
Health Insurance Nondiscrimination Died

Establishes the Healthy Maryland Program. Requires the Board to establish requirements and standards to consistent with state nondiscrimination laws, including those pertaining to genetic information. Participating providers may not refuse to provide health care services on the basis of genetic information.  Died.

Kentucky 2020 State Bills
Kentucky 2020 SB 116
Privacy Died

Establishes the parent's bill of rights.  Requirements set forth in the bill include parental written consent before any record of a minor child's blood or DNA is made, shared or stored unless required by law or court order.  Died.

Massachusetts 2020 State Bills
Massachusetts 2020 S.1898
Other Topics Died

Prohibits any person whose business includes sponsoring, guaranteeing or granting funds or engaging in investment transactions from discriminating against any person in the sponsoring, guaranteeing or granting of funds or making available such funds, because of various factors, including genetic information.  2/27/2020 Accompanied study order. Died.

New Jersey 2020 State Bills
New Jersey 2020 A1170
Privacy Died

Makes DNA samples and genetic information resulting from DNA analysis property of the person sampled or analyzed. Died.

Vermont 2020 State Bills
Vermont 2020 S197
Employment Nondiscrimination, Health Insurance Nondiscrimination, Other Topics, Other Lines of Insurance Nondiscrimination Died

Prohibits discrimination based on an individual’s genetic information in relation to employment, labor relations, insurance coverage, and the provision of social and medical services. In some areas such as employment and insurance existing genetic nondiscrimination law are amended.  Died.

New Jersey 2020 State Bills
New Jersey 2020 S2069
Privacy Died

Exempts certain health information, including genetic information, contained in 9-1-1 calls from definition of government record.  Died.

New York 2020 State Bills
New York 2020 S7505
Employment Nondiscrimination Enacted

Declares that it is the policy of the state and all its political subdivisions to ensure a fair, non-biased compensation structure for all employees.  Status within one or more protected class or classes may not be considered directly or indirectly in determining proper compensation or pay for any individual or group of employees, and no employee with status within one or more protected class to classes may be paid a wage at a rate less than the rate at which an employee without status within the protected class or classes in same establishment is paid for similar work. Protected class includes predisposing genetic characteristic.  4/3/2020 Signed by the Governor.

New York 2020 State Bills
New York 2020 S7506
Other Topics Enacted

Requires the state university of New York to issue a request for proposals to partner with hospitals both within the state university of New York and other not-for-profit hospitals and non-profit higher education research institutions to map the genomes of individuals suffering from or at risk of Alzheimer's.  4/3/2020 Signed by the Governor.

Connecticut 2020 State Bills
Connecticut 2020 SB 208
Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Died

Prohibits insurers, health care centers or fraternal benefit societies from purchasing information from direct-to-consumer genetic testing; requesting or requiring that a person disclose this information; or using such information in connection with the issuance, extension, renewal or withholding of an annuity, life insurance or health insurance. Insurers may not make provision of any insurance coverage, benefit, rate or term based on a requirement to undergo genetic testing or the results of a genetic test of an individual's family unless the results are in the individual's medical record. Died.

Massachusetts 2020 State Bills
Massachusetts 2020 S.2800
Privacy Died

Prohibits an agency, executive office, department, board, commission, bureau, division or authority of the commonwealth or a political subdivision thereof, or any agent, contractor or subcontractor thereof, from acquiring, possessing, accessing or using any biometric surveillance system or any information derived from a biometric surveillance system operated by another entity.  Allows certain exceptions such as the use of facial recognition technology by the registrar or motor vehicles.  Biometric data is defined to include deoxyribonucleic acid.  7/14/20 Passed to be engrossed. Reprinted as amended, see S2820. Died. 

Connecticut 2021 State Bills
California 2021 HB 5017
Health Insurance Coverage Died

Requires health insurance coverage for genetic cystic fibrosis screenings for women. Died.

Missouri 2021 State Bills
Missouri 2021 SJR 26
Health Insurance Nondiscrimination Died

Proposes a Constitutional amendment, if approved by the voters, to provide that prohibits health plans from limiting or excluding benefits relating to any condition based on the fact that the condition is a preexisting condition or charging a different premium rate or imposing different out-of-pocket costs for the same coverage based on the fact that a person covered under the plan has a preexisting condition. Genetic information should not be treated as a preexisting condition in the absence of a diagnosis of the condition related to such information. 4/22/2021 Voted Do Pass Senate Insurance and Banking Committee. Died. 

Utah 2021 State Bills
Utah 2021 HB 274
Privacy Died

Requires a government agency to make an annual report to the state auditor regarding: the government agency's collection, use, and disclosure of personal identifying information; any misuse or improper disclosure of personal identifying information; and measures taken to notify individuals of any misuse or improper disclosure. Personal identifying information includes DNA. 3/5/2021 House filed. 

Maryland 2021 State Bills
Maryland 2021 SB 112
Privacy Died

Amends statute requiring a business that maintains personal information of an individual residing in the State to implement and maintain certain security procedures and practices. The bill adds the following to the definition of personal information:  genetic information with respect to an individual, including the genetic sample of an individual; the genetic test of an individual; the genetic test of an individual's family member; the manifestation of a disease or disorder in a family member of an individual; any request for and receipt of genetic counseling, or genetic education; and any information derived from genetic information with respect to an individual. In the Senate - Hearing 2/10 at 1:00 p.m. Died.

New York 2021 State Bills
New York 2021 A3802
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. 

Florida 2021 State Bills
Florida 2021 SB 1140
Other Topics, Privacy Died

This bill prohibits DNA analysis and disclosure of DNA analysis results without authorization; prohibits the collection or retention of a DNA sample of another person without authorization for specified purposes; prohibits specified DNA analysis and disclosure of DNA analysis results without authorization, etc.

Oregon 2021 State Bills
Oregon 2021 SB 699
Health Insurance Nondiscrimination Enacted

Amends state health insurance nondiscrimination law. Removes provision stating that genetic information does not constitute a preexisting condition, and, alternatively, prohibits grandfathered health plan from any imposing preexisting condition exclusion. Signed by the Governor on 6/11/2021. Effective September 25, 2021. 

South Carolina 2021 State Bills
South Carolina 2021 SB 900
Privacy Pending

Enacts the Parental Bill of Rights. Establishes certain rights of parents, including the right to consent in writing before any record of a child's blood or deoxyribonucleic acid (DNA) is created, stored, or shared, except as required by general law or authorized pursuant to a court order. Carries over to 2022.

Hawaii 2021 State Bills
Hawaii 2021 HB 241
Employment Nondiscrimination, Other Topics Pending

Prohibits discrimination in employment and public accomodation based on an individual's invasive medical test status. Invasive medical test status is defined to include a medical test or screening that requires a sample of an individual's genetic material. Carries over to 2022 session. 

Displaying 751 - 775 of 1188

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. 
  • 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: August 3, 2020