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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
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.

Colorado Privacy Died

This bill requires a state agency or educational institution to obtain consent from parents or eligible students prior to collecting certain data, including biometric records. Biometric records are defined to include DNA. Died.

New York Health Insurance Coverage Died

This bill requires accident and health insurance policies to cover the cost of genetic testing of people with a family history of cancer when his or her physician determines that there is a significant risk of developing cancer. Measure failed.

New York Health Insurance Coverage Died

This bill 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 of cancer. Measure failed.

California Health Insurance Nondiscrimination Enacted

This bill requires an issuer of a Medicare supplement contract, policy or certificate to adhere to the requirements imposed by the federal Genetic Information Nondiscrimination Act of 2008. Approved by the Governor July 2, 2009.

Minnesota Other Topics Died

This bill requires any person who provides a specimen collection kit to a resident of Minnesota for the purpose of collecting genetic material to perform a genetic test to first provide the resident with the disclosure, as described in the legislation. The bill also requires a study to determine which companies and laboratories are providing direct-to-consumer genetic tests to Minnesota residents. Measure failed.

Minnesota Other Topics Died

This bill requires any person who provides a specimen collection kit to a resident of Minnesota for the purpose of collecting genetic material to perform a genetic test to first provide the resident with the disclosure, as described in the legislation. The bill also requires a study to determine which companies and laboratories are providing direct-to-consumer genetic tests to Minnesota residents. Measure failed.

Minnesota Other Topics Died

This bill requires any person who provides a specimen collection kit to a resident of Minnesota for the purpose of collecting genetic material to perform a genetic test to first provide the resident with the disclosure, as described in the legislation. The bill also requires a study to determine which companies and laboratories are providing direct-to-consumer genetic tests to Minnesota residents. Measure failed.

California Health Insurance Nondiscrimination Enacted

This bill requires carriers and health care service plans offering plan contracts in the individual market, other than individual grandfathered plan coverage, to offer to the responsible party for a child coverage for the child that does not exclude or limit coverage due to any preexisting condition of the child. A health care service plan may not condition the issuance or offering of individual coverage on certain factors, including genetic information. Signed by the Governor on September 30, 2010.

Illinois Health Insurance Coverage Enacted

This bill requires coverage for a mammogram at the age and intervals considered medically necessary by the woman's health care provider for women under 40 years of age and having a family history of breast cancer, prior personal history of breast cancer, positive genetic testing, or other risk factors. This bill also requires coverage for a comprehensive ultrasound screening of an entire breast or breasts if a mammogram demonstrates heterogeneous or dense breast tissue based on the Breast Imaging Reporting and Data System established by the American College of Radiology or if the woman is at increased risk for breast cancer due to family history or prior personal history of breast cancer, positive genetic testing, or other indications as determined by a woman's health care provider. Signed by the Governor August 24, 2007.

North Carolina Health Insurance Nondiscrimination Enacted

This bill requires health benefit plans and insurers to comply with all applicable standards of Public Law 110-233, known as the Genetic Information Nondiscrimination Act of 2008, as amended by Public Law 110-343, and as further amended. Signed by the Governor July 31, 2009.

Hawaii Health Insurance Nondiscrimination Died

This bill requires health benefit plans to include lower deductibles and co-payments for non-tobacco smokers and others at low risk. Genetic factors and pre-existing conditions may not be considered a behavior. Measure failed.

Alaska Health Insurance Nondiscrimination Enacted

This bill requires health care insurers in the individual market to comply with genetic information nondiscrimination requirements established under 42 U.S.C. 300gg-53. Health care insurers in the group market must comply with genetic information nondiscrimination requirements established under 42 U.S.C. 300gg-1(b)(3), 42 U.S.C. 300gg-1(c) - (f), and 42 U.S.C. 300gg-91. Signed into law August 5, 2009.

New York Health Insurance Coverage Died

This bill requires health insurance policies to cover comprehensive genetic screening for breast, ovarian, prostate, colon and lung cancers. Died.

Nevada Health Insurance Nondiscrimination Died

This bill requires health insurers to comply with the Genetic Information Nondiscrimination Act. Measure failed.

Nevada Employment Nondiscrimination, Health Insurance Nondiscrimination, Privacy Enacted

This bill requires health insurers to comply with the Genetic Information Nondiscrimination Act. Signed by the Governor May 29, 2009.

New York Health Insurance Coverage Died

This bill requires health insurers to cover genetic testing of persons with a family history of cancer when the attending physician determines such person has a significant risk of cancer. Measure failed.

Arizona Health Insurance Coverage Died

This bill requires hospital or medical service corporations, health care service organizations, and individual, group and blanket disability insurers who provide health care coverage to pregnant women to cover the cost of genetic testing for thrombophilia if it is ordered by a physician. Measure failed.

Massachusetts Health Insurance Coverage Enacted

This bill requires individual accident and sickness policies, individual and group hospital service plans, the group insurance commissionplan for active and retired employees, and individual or group medical service agreement and health maintenance contract to provide benefits on a nondiscriminatory basis for diagnosis and treatment of autism. Diagnosis of autism spectrum disorders is defined to include genetic testing. Signed by the Governor August 3, 2010.

Massachusetts Health Insurance Coverage Died

This bill requires individual accident and sickness policies, individual and group hospital service plans, the group insurance commissionplan for active and retired employees, and individual or group medical service agreement and health maintenance contract to provide benefits on a nondiscrminatory basis for diagnosis and treatment of autism. Diagnosis of autism spectrum disorders is defined to include genetic testing. Accompanied a new draft 2010 H. 4935, which was enacted.

Oklahoma Health Insurance Coverage Died

This bill requires individual and group health insurers that provide coverage on an expense-incurred basis to provide reimbursement not to exceed $115 for mammography screening any female under 35 with a genetic predisposition to breast cancer. Measure failed.

Florida Health Insurance Coverage Died

This bill requires individual and group health insurers to provide benefits or coverage for periodic colorectal cancer examinations and laboratory tests for individuals over 50 and for individuals under 50 who are considered high risk. Definition of high risk includes individuals who, because of the presence of recognized genetic markers, face a higher than normal risk of colorectal cancer. Measure failed.

Florida Health Insurance Coverage Died

This bill requires individual and group health insurers to provide benefits or coverage for periodic colorectal cancer examinations and laboratory tests for individuals over 50 and for individuals under 50 who are considered high risk. Definition of high risk includes individuals who, because of the presence of recognized genetic markers, face a higher than normal risk of colorectal cancer. Measure failed.

Montana Privacy Died

This bill requires parental consent or consent from a student 18 years or older prior to collecting or recording biometric data, which is defined to include a DNA sequence. Died.

Oklahoma Use of Residual Newborn Screening Specimens Enacted

This bill requires parental consent required to store, transfer, use or database DNA from any newborn child. Signed by the Governor May 11, 2010.

Michigan Privacy Died

This bill requires the Department of Community Health to develop a model written, informed consent form for genetic testing. Health care professionals must have test subjects complete the form prior to ordering genetic testing. Died.

California Use of Residual Newborn Screening Specimens Enacted

This bill requires the health department to charge a fee to researchers and health care providers who have been approved by the department to use stored umbilical cord, pregnancy blood, or newborn blood samples for research to cover the costs of administering the program. Signed by the Governor October 11, 2007. (The bill goes into effect only if 2007 AB 34, which was enacted during the 2007 session, becomes law before January 2008.)

New York Use of Residual Newborn Screening Specimens Died

This bill requires written parental consent to store a newborn's test, blood spot or other genetic information for any purpose other than newborn screening. Died.

Maryland Privacy Died

This bill restricts access to, use of and retention of DNA samples and disclosure of DNA test results without consent with some exceptions. The bill also provides personal property rights to DNA samples and DNA test results. The bill requires the health department to develop a uniform written informed consent form. Civil and criminal penalties are set forth, and individuals whose rights are violated may bring civil action. Measure failed.

Maryland Privacy Died

This bill restricts access to, use of and retention of DNA samples and disclosure of DNA test results without consent with some exemptions. The bill also provides personal property rights to DNA samples and DNA test results and requires the health department to develop a uniform written informed consent form. Penalties are set forth for violations. Measure failed.

New Hampshire Privacy Died

This bill restricts the collection of biometric data, including DNA or RNA, by state agencies, municipalities, and political subdivisions. 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 Jersey Privacy Died

This bill sets forth privacy protections for personally identifiable information collected by businesses. Personally identifiable information includes biometric data such as DNA. Died.

New Jersey Privacy Died

This bill sets forth privacy protections for personally identifiable information collected by businesses. Personally identifiable information includes biometric data such as DNA. Died.

New Jersey Privacy Died

This bill sets forth requirements for government collection of biometric identifiers, including DNA. No governmental entity shall obtain a biometric identifier of an individual without authorization of the individual, with some exceptions such as law enforcement. Died.

California Use of Residual Newborn Screening Specimens Enacted

This bill specifies that money from the genetic disease testing fund may be used for costs related to data management, and newborn blood collection, storage, retrieval, processing, inventory, and shipping. The health department, any entities approved by the department, and researchers shall maintain the confidentiality of patient information and blood samples in the same manner as other medical record information with patient identification and may use it only for approved research to (1) identify risk factors for children's and women's diseases;(2) research to develop and evaluate screening tests;(3) research to develop and evaluate prevention strategies; and(4) research to develop and evaluate treatments. The State Committee for the Protection of Human Subjects (CPHS) must determine if all of the if specified criteria are met for purposes of ensuring the security of a donor's personal information, before any blood samples are released pursuant for research purposes. Signed by the Governor September 25, 2010.

Minnesota Privacy, Research, Use of Residual Newborn Screening Specimens Died

This bill specifies that newborn screening activities are subject to state law on the collection, storage, use, and dissemination of genetic information. A new statute section also is created on the treatment of biological specimens and health data held by the health department and health boards. The new statute section allows the commissioner to collect, use, store, and disseminate biological specimens and health data to conduct research in a manner that is consistent with the federal common rule for the protection. Died.

California Health Insurance Nondiscrimination, Other Lines of Insurance Nondiscrimination Died

This bill states that all biological data derived from post-CLIA bioinformatics services shall be considered to contain genetic characteristics, as defined in section 1374.7 of the Health and Safety Code and section 10146 of the Insurance Code and is subject to the prohibitions in those sections of the statutes. Measure failed.

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.

Massachusetts Research Enacted

This bill states that any public health surveillance activity which is also research is subject to the requirements for research using human subjects. Signed by the Governor 12/19/2014.

California Privacy Died

This bill states that it is the intent of the Legislature to enact legislation to protect individuals from the unauthorized use of their genetic information, ensure that genetic information is personal information that is not collected, stored, or disclosed without the individual's authorization, provide protections for the collection, storage, and authorized use of genetic information, and promote the use of genetic information for legitimate reasons, including, but not limited to, health care, research, advancement of medicine, and educational purposes, as the field of genomics advances. Died.

Illinois Privacy Died

This bill was introduced as an amendment to the Genetic Information privacy Act. All language was stricken in a senate amendment and new language was added related to cancer drugs.

Illinois Privacy Died

This bill was introduced as an amendment to the Genetic Information privacy Act. All language was stricken in a senate amendment and new language was added related to firearms.

Wisconsin Employment Nondiscrimination Died

This bill would eliminate the compensatory and punitives damages for acts of employment discrmination or unfair honesty or genetic testing. Measure failed.

Wisconsin Employment Nondiscrimination Enacted

This bill would eliminate the compensatory and punitives damages for acts of employment discrmination or unfair honesty or genetic testing. Signed by the Governor April 6, 2012.

Missouri Health Insurance Nondiscrimination Died

This bill, as substituted by the Senate, prohibits the treatment of genetic information as a preexisting condition in the absence of a diagnosis and prevents the establishment of rules for eligibility or continued eligibility on the basis of a health status-related factor, including genetic information, in health insurance. Measure failed.

California Employment Nondiscrimination Enacted

This bill, referred to as CalGINA, prohibits discrimination based on genetic information in several areas in addition to those addressed by existing law, including in housing, at certain business facilities, at state agencies, entities funded by or receiving financial assistance from the state, and in the provision of emergency services. Signed by the Governor on September 6, 2011.

Missouri Privacy, Research Statute

This section of the law is applicable to all insurance companies. A person who creates, stores, receives or furnishes genetic information must hold such information as confidential medical records and must obtain written authorization to disclose genetic information. Exceptions include statistical data compiled without reference to the identity of an individual, health research conducted in accordance with the provisions of the federal Common Rule, and health research using medical archives or databases in which the identity of individuals is protected from disclosure by coding or encryption, or by removing all identities. The director of insurance has the authority to enforce these provisions.

Alaska Privacy Statute

This statute provides protections for the privacy of DNA samples and the results of DNA analysis. DNA samples and the results of DNA analysis are the exclusive property of the person sampled or analyzed. Samples collected and analyses conducted for the DNA registry, law enforcement purposes, paternity testing, newborn screening, and emergency medical treatment are exempt. The statute sets forth civi and criminal penalties for violations of the law.

California Other Topics Statute

This statute was amended as part of 2011 CA SB 559, referred to as CalGINA, by adding genetic information to the list of characteristics addressed in the Unruh Civil Rights Act. All people in California are considered free and equal, and no matter what their sex, race, color, religion, ancestry, national origin, disability, medical condition, genetic information, marital status, sexual orientation, citizenship, primary language, or immigration status are entitled to the full and equal accommodations, advantages, facilities, privileges, or services in all business establishments of every kind whatsoever.

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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