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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
Illinois Privacy Died

Amends the Genetic Information privacy Act. Makes a technical change in a section concerning the short title. Died.

Kansas Privacy Died

The state board, the department of education, a unified school district or local education agency may not provide any personally identifiable information of any student or teacher, including a DNA sequence, to any federal agency, any Kansas state or local agency, state or local agency outside the state of Kansas, or any other organization or entity unless under specified circumstances. Died.

Kansas Privacy Enacted

Prohibits school districts from collecting biometric data from a student, including a DNA sequence, unless the student, if an adult, or the parent or legal guardian of the student, if a minor, consents in writing. Approved by Governor on Wednesday, May 14, 2014.

Kentucky Health Insurance Coverage Died

Establishes mandated coverage requirements of genetic testing for mutations of the BRCA1 or BRCA2 genes for insured who are at risk of breast cancer or ovarian cancer or who have been diagnosed with breast or ovarian cancer under the age of forty. Died.

Kentucky Privacy Enacted

The bills governs the use of personal information by state institutions. The definition of personal information includes a biometric or genetic print. Signed by the Governor on April 10, 2014.

Louisiana Employment Nondiscrimination Died

Retains present law and extends the definition of "discriminatory practice in connection with employment" to include all of the discrimination statutes in present law, which would add veterans, pregnancy, childbirth, and related medical conditions, sickle cell trait, and genetic information. Died.

Louisiana Employment Nondiscrimination Enacted

Retains present law and extends the definition of "discriminatory practice in connection with employment" to include all of the discrimination statutes, which would add veterans, pregnancy, childbirth, and related medical conditions, sickle cell traits, and genetic information. Signed by the Governor on June 19, 2014.

Maryland Other Topics, Privacy Died

Requires the Motor Vehicle Administration to offer to an applicant for a driver's license, identification card, or moped operator's permit the opportunity to upgrade to an enhanced identification document. The enhanced ID will be embedded with memory and a microprocessor chip that stores biometric identifiers, which may include DNA. Died.

Maryland Other Topics, Privacy Died

Permits a health insurance carrier to make available upon request an upgrade to a biometric health care identification card that can securely validate one's identity and access his or her medical history. Biometric identification is defined to include DNA. Died.

Maryland Other Topics Died

Authorizes a person to advertise for, solicit business in the State for, offer, or perform direct to consumer genetic testing only if certain conditions are met. Died.

Maryland Other Topics Died

Repeals a prohibition on advertising for or soliciting business related to direct to consumer genetic testing in the State. Died.

Maryland Privacy Died

Allows the Motor Vehicle Administration to offer enhanced identification. An individual who applies for enhanced identification may be asked to provide biometric identification, which is defined to include DNA. Died.

Maryland Health Insurance Nondiscrimination Enacted

Amends existing law pertaining to carriers, defined as insurers, nonprofit health service plans and health maintenance organizations, that offer wellness programs. Health factors are defined to include genetic information. Carriers may seek verification from health care providers that a health factor makes it unreasonably difficult or medically inadvisable for an individual to satisfy or attempt to satisfy an otherwise applicable standard to qualify for a reward of the wellness program. Approved by the Governor April 8, 2014.

Massachusetts Research Died

This bill states that any public health surveillance activity which is also research is subject to the requirements for research using human subjects. Died.

Minnesota Use of Residual Newborn Screening Specimens Died

The original version of this bill amended the newborn screening law pertaining to storage of blood samples. All language was subsequently deleted pertaining to the newborn screening program.

Minnesota Research, Use of Residual Newborn Screening Specimens Died

The bill provides options to parents regarding blood samples collected for the purpose of newborn screening, including the right to authorize in writing that the blood sample and test results may be used for public health studies or research. Died.

Mississippi Employment Nondiscrimination Died

Makes it unlawful for any employer or insurer to use the results of DNA testing against a patient or against the patient's consanguineous family members for any discriminatory purpose. Any employer who violates this section shall, upon conviction, be fined up to $5,000.00 or imprisoned for not more than one year, or both. Died in Committee on February 4, 2014.

Missouri Privacy Died

This bill requires a state agency or education institution to obtain written consent from parents or eligible students before collecting any certain data points, including a biometric record (defined to include DNA). Died.

Missouri Privacy Died

This bill requires a state agency or education institution to obtain written consent from parents or eligible students before collecting any certain data points, including a biometric record (defined to include DNA). Died.

New Hampshire Privacy Died

This bill restricts the collection, storage, and sharing of student assessment data by the United States Department of Education and the New Hampshire department of education. Student assessment data includes biometric information, which is defined to include DNA. As of October 30, 2014, Interim Study Report: Not Recommended for Legislation in 2014 (Vote 15-0).

New Hampshire Privacy Enacted

No whole-genome DNA sequencing shall be performed pursuant to this chapter unless the general court authorizes such sequencing by statute. Signed by the Governor on 5/27/2014; Chapter 0063; Effective 1/01/2015.

New Hampshire Privacy Died

This bill establishes procedures for protecting the privacy of student and teacher personally-identifiable data, including DNA. As of October 30, 2014, Interim Study Report: Recommended for Legislation in 2014 (Vote 15-0).

New Jersey Privacy Died

Prohibits governmental collection of biometric identifiers without consent, including DNA. Died.

New York Health Insurance Coverage Died

Requires health insurance policies to cover comprehensive genetic screening for breast, ovarian, prostate, colon and lung cancers, if recommended by a board-certified geneticist or board-certified genetic counselor. Died.

Oklahoma Privacy Died

This bill prohibits collection or retention of biometric data in connection with motor vehicle registration or operation, the issuance or renewal of driver licenses or the issuance or renewal of any identification cards by any department or agency of this state charged with those activities. 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